Riding the Coaster...OR The Week Ending 11/29/2015

An interesting week, if that can be said.  

Monday, Mom was slightly alert.  She wasn’t very hungry and managed to eat the equivalent of most of one meal.  I tried helping her eat, but she really wasn’t very hungry.  Her motions were jittery and weak.  She seemed quite tired, and I requested they keep her up as long as possible, rather than return her to her room and bed.   

Tuesday, Mom was in her wheelchair, and I, again, tried helping her eat.  She had no interest in any of the food - that is until the dessert came.  She wanted to eat this on her own but kept dropping the spoon.  The resident pastor was there and she was quite helpful.  Mom managed to eat about half her dessert, but she kept dropping it, but she stated she was through.  They were going to attempt to keep her awake again, and see how she did.  

Mom thinking about what she wants to do

That evening, they took away her bed and replaced it with the hospital bed, and an alarm, in case she decided to get up in the middle of the night.   

Wednesday, Mom was sitting up in her new bed and in a relatively good mood.  She willingly allowed them to change her and clean her up.  There was no protest.  She still didn’t eat much, but they did try as much as possible with all three meals.  

Thursday, Thanksgiving, Mom was up, again, and it was pretty much a repeat of Wednesday.  Her voice was quite weak, and she appeared very tired despite her long slumbers.  

Friday, Jean came for a visit, and when I arrived she and Noelle (the hospice nurse) were working with Mom to help her eat and to check her vitals.  Noelle wasn’t quite successful with her enticements of chicken for Mom, but Jean was able to get a couple of mouthfuls of pie in her.  

Jean tries to converse with a very tired and reluctant Mama.

She had been quite alert, according to the two of them, but what I saw was her very tired self, again.  I was able to put some slippers on her, as she had refused them earlier.  She then decided she was going to powernap, and as she did Noelle and I were able to conference over medications and other whatnots dealing with the Mater.

Mom power naps while Noelle works on her report

Saturday found Mother quite tired.  She had been given some medication to help with constipation and it worked - during the night - all night.  She had made it to the loo twice with no help, and the rest of the time staff was able to aid her.  They did help her back to bed, as she was quite unsteady on her feet.  

My brother and his son had just arrived from Washington to see her around 11, but as she was still abed, it seemed reasonable for them to return later.   I mentioned she seemed quite alert and bright when she greeted them.  “That was alert?” my brother inquired.  I affirmed my statement.  And, to be honest, she was the most chipper I’d seen her in a while, and she’d been awakened by our presence.  

My brother and son returned later and had a nice visit with her.  She still didn’t eat much - only half her lunch.  

Later that evening, I received a call.  Mom had just punched the med-aide 3 times while she was trying to give her the medications, and to put Mom in her wheelchair.  Mother was quite belligerent!   She complained she didn’t need any pills!  and she could stand on her own two feet (which she was doing when the aide walked in).  The aide quickly pushed the chair behind Mom and suddenly Mom began to fall backward - luckily into the chair.  Whew!

On Sunday, Mom was determined to walk to breakfast.  She did, with help.  She refused the walker and the wheelchair.   She ate abotu 80% of her breakfast, and then went to her room to rest. And rest she did. She did not come out until dinner.

For dinner, Mom used the wheelchair, as her legs simply wouldn't comply, and she gladly rode to the table. And this is where I'll leave you for this week.

Stay tuned for more!

Mom and her friends in the '70's:  L-R Mom, Florence Fletcher, Martha Lou Magin, Unknown. 2nd Row: Bobby Harrah and 3 Unknown ladies.

What To Be Thankful For This Thanksgiving

Thanksgivings at home were always fraught with the aromas of turkey, gravy, cake, cookies, and the sounds of dedicated cooking - with the occasional fracas - well, a lot of fracases (should that be fraci?)  But as I grow older I have come to realize, especially this year, what there is to be truly grateful for:

Waking up in the morning
Breathing
Knowing there are others about - somewhere
A Clear Mind
The Ability to Sense
The Ability to Communicate
Movement
Rising from Bed
A Good Shower
Food in the Belly
Clothes on the Body
A Smile
Knowing Others Are Available for Help When Truly Needed

These are only a few.  But they form the basis of our lives.

I'm grateful Mom is safe, has people attending to her needs, has people who care and move with her whims.

It is a bit bleak to understand there is so little she understands, and yet she is content and not suffering.  That, in itself is a blessing.

For all this, I am grateful.  And we are all truly blessed. 

The Final Stages of Lewy Body Dementia - What To Expect

The skies were wracked with clouds today; the sun trying to shine through.  Before I left to see Mom I received a snap in a text that showed her smiling and out of her room.  The sun began to shine outside.

The past few days have been something of a torment.  Mom had been doing so very well, and then the chair incident from last Tuesday.  From there we went to less food, less interaction, and finally her not being able to walk or stand on her own.   

Today, Mom had a very soft voice - nearly unintelligible.  She ate very little (probably about 50% breakfast and <10% lunch, but did eat afternoon snack).  She was so very tired, but they kept her in the great room so she would be stimulated and wouldn’t just sleep, as she did all weekend.

This was not the woman I remember, but I know she’s in there somewhere.  And, as I begin to line the final ducks up in their row, I wanted to understand the final phase of Lewy Body Dementia.  Are we truly there?  Are we really undergoing that transition?  

According to the Alzheimer’s North Carolina:

• By the end of the disease, the person will typically be bedbound or will need specialized seating in a reclining seating system. Rigidity and stiffness are very common and make movement and care very difficult for both the caregiver and the person with DLB. The person is able to move little and requires major amounts of physical help for all care and engagement in preferred activities. The person may find touch uncomfortable and painful, even if it is delivered slowly and gently. The person typically has a very difficult time communicating. Speech is very soft and indistinct and often off target or repetitive in nature. (DLB)

This is almost Mom at this time, except for the touch.  Mom liked it when I stroked and held her hands today.  

Mom is now going to be using a wheelchair, as she can no longer support her own weight.  She cannot walk - she needs at least 2 aides to move from place to place.  

When Mom ate, it was either by my feeding her, or her trying, but she kept dropping spoons and losing her grip on the dish.  The strength she had last Monday has left her.  

As I stated earlier, her voice is very quiet.  If she weren’t out in the great room, she would be in bed, asleep.  

So, what’s next?   More of the same, but incrementally becoming more pronounced in its presentation:  

• Death is typically a result of pneumonia or other infection, which the body cannot fight off even with the use of antibiotics. Pneumonia is typically caused by aspiration (food or liquids getting into the airway due to problems with eating or drinking and breathing regulation). Other infections can be localized (repeated UTIs (urinary tract infections), open pressure ulcers or wounds (caused by the inability to move or friction with repeated movements), skin injuries (when hitting a hard or sharp surfaces or skin exposure to urine or feces), or contractures (tightening and shortening of muscles that keep body parts closed together), the use of tubes or catheters (feeding tubes or urinary catheters). Still other infections can be or systemic, called sepsis, an infection in the blood stream.  Other causes of death include malnutrition and dehydration, complications following falls (head injury or fractures), pulmonary emboli (clots that travel to the lungs due to prolonged immobility), or heart failure.(DLB)

This is the part I must be ready to face.

Knowing that Mom is in hospice, and also receives some of the best palliative care possible, makes me glad that I know she’s comfortable and well cared for.   

One question that seemed to come up in my conversations with the hospice staff was ‘Why was she punching so many people for no reason?’  Well, according to livestrong.com, in the final stages of LBD Anxiety, depression, emotional ability and aggression are common in late-stage LBD.Final Stages of Lewy Body Dementia

I guess that answers that!

The best information, though, came from the blog The Lewy Body Rollercoaster (Nearing the End of the LBD Journey)  This helps answer so much, and also offers what we might expect in the next weeks/days:   This was posted by the Whitworths, authors of some of the books recommended on this blog.  

Saturday, April 21, 2012

Nearing the End of the LBD Journey

We received a question recently about how end-stage Alzheimer's (AD) and LBD differ, and what to be concerned about. By the time a person reaches end-stage dementia, there’s so much damage that it’s all very similar and you may not see much difference. These are some of the differences you might see along with some suggestions about care:

Cognition degeneration: Both AD and LBD are degenerative dementias. That is, cognitive abilities will gradually decrease over time.

o   LBD’s characteristic fluctuations between awareness and confusion continue even into this late stage, albeit, few and far between. It is not unusual for patients to know their family members just before death. Look for these and take advantage of them for a final goodbye. However, remember that by now, your loved one will not be able to communicate well.

·         Communication: Eventually any dementia patient will lose the ability to communicate through the normal channels of talking and facial expressions. However, there’s research saying that comprehension is the last ability to go, and so continue talking to your loved one and assume understanding. Remember that touch continues to be important, as does a loving tone of voice. In addition, don’t talk about them or argue with others in their presence anymore than you would if they were responding.

o   LBD weakens facial muscles, thus talking and facial expressions become difficult often well before the end stages. Add LBD’s larger share of confused thinking.  The result is that much earlier than with AD, LBD folks may stop trying to communicate through normal channels. Behavior becomes the main form of communication.

·         Acting out behaviors: Consider acting-out behaviors the body’s call for help. They usually become more intense as normal channels of communication fail. Look for physical and/or environmental reasons for the behavior: pain, too much stimulation (light, sound, etc.) See previous blogs, and our book, The Caregiver’s Guide to Lewy Body Dementia.

o   LBD affects thinking early on, thus acting-out due to delusions can be a very early, sometimes first symptom. LBD-related symptoms such as hallucinations and acting-out behaviors will increase as communication becomes more difficult. However, they may change in form. With degenerating health, agitation and restlessness may be the most common “acting-out” behaviors.

·         Sleeping. People with any kind of dementia tend to sleep more and more as the end nears—20 hours a day is more the norm than not. If your loved one is restless or agitated at this stage, consider this “acting-out behavior” rather than a sleep problem.

·         General health: Eventually any degenerative dementia will cause a body to become incapacitated and die.

o   LBD is more than a cognitive disorder. As already mentioned, its effect on muscles makes communication difficult. It can also weaken other muscles, and it can affect physical health right from the beginning. Therefore, complications like pneumonia, urinary tract infections or falls can be life threatening.  Good patient care and early detection of problems become very important. Consider increased acting-out a signal that something is not right. Check for UTI’s, constipation, or other signs of discomfort. If you can find and remove the irritant, the restlessness should decrease.

·         Life expectancy: If there are no complications, a person with dementia can live for many years before enough brain cells have died to shut everything down—often 20 years or more.

o   LBD patients usually do have complications. Therefore, life expectancy is short: 2 to 7 years after diagnosis. However, LBD is seldom diagnosed until well into the disease process. Life expectancy from the first LBD symptom remembered by spouse or family would likely be similar to AD’s 15-20 years—perhaps longer with good care.

I will be posting more research as it comes up, but also updates on Mom, so stay in touch!

Reading/Research:

LBD Story: Facing Tough Choices at the End of Life

The Role of Palliative and Hospice Care in Lewy Body …

DLB

Final Stages of Lewy Body Dementia

Nearing the End of the LBD Journey

Lewy body dementia has symptoms even worse than those of

Stories, August - November 2007 (9 stories)

Lewy Body Dementia: Information for Patients, Families

The Last Stages of Life

Lewy Body Dementia (LBD)

Falling Fast OR The Week Ending 11/22/2015

This has been a week of some ups but mostly downs.  Read on:

On Monday, Mom seemed fine.  She participated in her activities, and right after BINGO, she retired to her room to rest.  She went to her recliner and stayed there.  She didn’t eat, she didn’t arise for any reason, she just stayed.  We aren’t talking about a couple of hours, here, but for more than 24 hours.

Staff tried to help her up, but she began swinging those well-known fists at them, so they backed off.  

They phoned me to ask permission to call 911 for the firefighters to come and lift her so they could bathe her and change her - nothing else seemed to be working.  I agreed, so long as they were forcibly gentle but gruff.    

They had checked her for stroke symptoms, but all her vitals were fine - the only thing Mom refused to do was stick out her tongue.

I soon received another call from Noelle, the hospice nurse, that Mom was now bathed and comfortable in her bed. They hadn’t needed to phone 911, but Morina had saved the day.

Morina pushed everyone outside and then closed the door.  She told me she first went to Mom’s closet and began going through her clothes, telling Mom what she was doing.  This raised Mom’s ire.  Mom told her to stop, and Morina said, “Get up and make me.”  

Next, Morina went to Mom’s dresser and began going through her drawers.  Mom was growing more and more agitated.  Morina laughed and told her, “If you want me to stop, you’ll just have to get up and stop me.”  Mom still sat.

Finally, Morina went to the bathroom and poked her head out and said, “Look!  I’m in your bathroom now!  I’m going to go through all your things in here!”  This had irritated Mom so much that she arose and went to the bathroom.  Morina then ran out of the room, grabbed Noelle and an aide, and the three of them prepped her for the shower.  Mom was bathed and changed.  

Wednesday morning, Mom arose and went back to bed after dressing.

The RLC came to visit in the early afternoon.  Here is their account:  

It was a frustrating time with Norma yesterday. We got there just after 1 pm, and Norma opened her door for us, greeting us as usual.  Then she decided to lie down on her bed, barely speaking, with eyes closed, as we did our best to coax her to get up.

She was wearing some striped socks.  Okay--but when we found the nice brown shoes for her, after learning (with great effort) that her gray slippers could not fit, Norma took the socks from the shoes, and took off the other socks, putting on the "used" ones.  Okay--no biggie.  We searched for more shoes--oh, how we searched--and Connie found the gray Sketchers under a pile of towels in the bathroom.

We did our darndest to get the Sketchers on Norma, but no shoe horn.  None from a caregiver either (NB. Mom’s shoe horns are in the drawer by the sink) All this struggling was with Norma lying on her side, feet available.  She sat up for awhile during this exercise/ordeal, then back to lying down.

At 2:30 we asked a caregiver for help. She said she would get Morina, who was due back from the music event.  Soon Morina came in, reminded Norma she'd had no dinner, breakfast or lunch--to get up to eat.

More coaxing--Connie set her walker by the bed, to help Norma get up.  After several tries, she did stand UP!  Used the walker to go to the big room for lunch. No shoes on, but no problem.  After 3 by then.

Lunch looked good--stuffed green pepper, with lots of meat, glass of water and cup of coffee. Connie had brought oranges; Jean peeled one for Norma, who showed no interest, and set the pieces artfully on a piece of paper towel.  Norma almost licked her platter clean, including the orange pieces. She did not ask for anything else.

Norma set the WSJ on her lap, later, on the table. A bit before 4 pm we said our goodbyes, with no comment from her, and promised to come visit again. Norma sat quietly. We hope she at least glanced at the newspaper.

It was the saddest visit we have ever had.  Almost no sensible words just phrases spoken in a low voice.  I hope getting some food into Norma gave her a bit of energy.

Connie and Jean always can entertain one another, and we try to involve Norma...sometimes it works.

This is becoming the norm for Mom now.   

After Connie & Jean left, Mom went to bed and stayed there.  

Thursday, Mom arose around 10 and ate breakfast.  She then ate about 10% of her lunch.  After reading the paper, she went back to bed, where she rested - snoring quite loudly.  Around dinner time, she came out, dressed in her sweater, wearing lipstick, purse on her arm, and said, “I’m ready to go now!”  

When asked where she was going, it wasn’t clear she understood.  She then retired to her room and went back to sleep.  

Friday, she arose around 11, ate breakfast, looked at her paper, and then ate a tiny bit of lunch.  Soon, my brother and his wife arrived from Seattle, and they visited with Mom.  Mom wasn’t very talkative, so my sister-in-law got up and left the two of them alone.  That’s when Mom began to converse - albeit in a very low and confused tone.  

After a while, they helped her back to her room where she went back to sleep.  She would not come out later, and remained in her room for the night.  She would not eat that evening, either.

Saturday, Mom was up using the “facilities” when staff checked on her in the morning.  They went back in a short time later to find her on her knees by her bed.  Noelle and I discussed the possibility of a walker for her - it’s on order.   Staff put her in bed and she remained there for the rest of the day, refusing to eat, except breakfast and some yogurt, which were fed to her.

Sunday morning, I received a call around 615am that Mom was, once again, found crumpled in the hallway.  She was returned to bed.  What I’ve also learned is that Mom can no longer support her own weight.  So, I requested Noelle order a wheelchair - which means moving some of her furniture out of her room.

Today, I bought her some new slippers and a new pair of slip-ons that would more easily fit her feet, and would also facilitate easier putting them on and taking them off.  I also showed staff where the shoe horn was.

Mom was fed breakfast, but had a tough time raising herself up; they gave her some methadone which enabled her to move a bit more so it would facilitate this.  Then, she dropped off into a deep sleep.

When I went in to see her, she was fast asleep.  She opened her eyes once or twice, but there was no waking her without her falling back into her slumbers within seconds.  

The concerns here are whether or not she will have another go at being with us, or if this is the final descent into another life.  Arrangements have already begun, just to be on the safe side, and to help ease the situation when it does occur.  

Prayers are most welcome at this juncture.  

Is It Prosopagnosia or Capgras? Frontal Temporal Dementia and Lewy Body Dementia

It was a rather curious moment.  If you recall last Sunday’s post, I mentioned that Mom was unable to recognize the people in the photos next to her door - including herself; this was followed by her inability to recognize a just snapped shot of herself and yours truly.  This was prompted by her not able to figure out how the picture on the cover of the jigsaw matched with the pieces - she saw two different pictures.  She was able to explain what she saw, and yes, they were the same, but she claimed they were quite different.  Why?

Well, after she told me it wasn’t me in the photo with her, nor was it herself, I wondered what caused this, as well as what the clinical term might be.  Well, I found it and I’m going to share with you, today.

Prosopagnosia is a condition in which the patient is impaired enough to be unable to recognize faces.  I remember there was an episode of “The Good Wife” in which this was highlighted with a client.  There is also involved in Mom’s Lewy Body Dementia the condition of Capgras Syndrome, in which the patient is unable to recognize faces, as well.    However, my understanding is that with Capgras the patient misidentifies a person and believes them to be an imposter - not believing they are who they claim to be; this can be reversed, at times, when the person misidentified leaves and returns.  With Prosopagnosia, this doesn’t seem to be the case.  

Prosopagnosia is caused by Frontotemporal Dementia, which allows us to realize that Mother’s dementia has claimed that region of her brain.  This is something normally attributed to severe trauma to the frontal lobe of the brain, which gave me pause at first.  But upon further examination I began to look at speech and whether or not this could also be a condition from FTD (Frontotemporal Dementia), also known as Pick’s Disease.  

Oddly, though, LBD (Lewy Body Dementia) and others are quite dissimilar to FTD.  While the alpha-synuclein acids may be affecting the cerebral cortex and working their way through the brain, and while they may affect the frontotemporal lobe, the two dementias are not connected.  

I think back to the year 1964 when we had our horrific auto accident driving to Seattle from Yakima.  Mom was hospitalized for days - what forms of trauma I haven’t a clue, as I was a wee tot riding in the front with Dad and herself.  I remember waking up in the ambulance next to Dad, and then in the hospital with my three brothers.  We weren’t that hurt, but Mom seemed to be.  The car was totalled.  Did she suffer frontotemporal trauma?  Could this be another layer to her dementia, aided and abetted by the LBD?  Interesting question, but I tend to think not.  

While she might be demonstrating signs of prosopagnosia and language deficit (the latter is quite common with dementia sufferers), it would be difficult to tie them in with FTD, although there may still be a link and I’m not completely able to see it.  Oh well.  Just a thought and a follow up with some interesting questions at this time…

But I did learn something interesting!  Prosopagnosia and Capgras are very similar conditions with differing types of dementia.  What Mom must be experiencing is Capgras - or a variant thereof.  But who am I to tell?

Some Interesting Reading:

“Other” Dementias

Marantz, Andrew G, and Joe Verghese. "Capgras' syndrome in dementia with Lewy bodies." Journal of geriatric psychiatry and neurology 15.4 (2002): 239-241

Gibb, WR et al. "Cortical Lewy body dementia: clinical features and classification." Journal of Neurology, Neurosurgery & Psychiatry 52.2 (1989): 185-192.

Read, Stephen L et al. "SPECT in dementia: clinical and pathological correlation." Journal of the American Geriatrics Society 43.11 (1995): 1243-1247.

Lewy Body Dementia

Nature and extent of person recognition impairments …

Diagnosis and Management of Dementia

Apraxia, agnosias, and higher visual function abnormalities

Capgras' Syndrome in Dementia with Lewy Bodies

Electrodermal discrimination of familiar but not unfamiliar … (this discusses Prosopagnosia and Capgras).