The Toll of Lewy Body Dementia

It is very annoying when people tell me or anyone else that Mom has Alzheimer’s.  Seriously?  That would be like telling someone that the patient has breast cancer when they really have leukemia or pancreatic cancer.  There is a difference!  They fall under the same umbrella of Dementia, and sometimes the two types mix, but they are different.  

Patients with LBD (Lewy Body Dementia) require more services, resources, and assistance than those with AD.   Their lifespan is shorter, but as the disease is so different for each patient, it’s difficult to really catalog the length the disease takes from diagnosis to completion or death.   

The cause of LBD is stated as being:

DLB is named after smooth round protein lumps (alpha-synuclein) called Lewy bodies, that are found in the nerve cells of the affected parts of the brain. These "abnormal protein structures" were first described in 1912 by Frederich Heinrich Lewy, M.D., a contemporary of Alois Alzheimer who first identified the more common form of dementia that bears his name.

Lewy bodies are found throughout the outer layer of the brain (the cerebral cortex) and deep inside the midbrain and brainstem. They are often found in those diagnosed with Alzheimer's, Parkinson's, Down syndrome and other disorders.

The cause of DLB is unknown and no specific risk factors are identified. Cases have appeared among families but there does not seem to be a strong tendency for inheriting the disease. Genetic research may reveal more information about causes and risk in the future. It usually occurs in older adults between 50-85 years old and slightly more men than women have the disease.

Now, Mom went through doctors rapidly.  She fired one for reasons unknown, the second she fired when her driving was questioned, the third was an interim while she waited for an opening with another.  During that time she was strongly urged to see a psychiatrist, which she told me was not going to happen.  “I’m not going to sit in the hallway while you and everyone else discuss what is wrong with me!”  This is a reflection of how the disease warps thinking.

Mom finally did see a psychiatrist, thanks to her friend, Philis.  She was put on a more holistic regimen of medications which she hated as they didn’t have the “kick” of the earlier ones.  At last, she found a doctor who went along with Mom’s suggestion she be put back on to Lorazepam, which she began to take and take and take - without realizing the effects.  

Finally,  there was so much going on that she was referred for hospitalization in order to observe her.  Here, they were able to diagnose her with LBD.

Once they had the diagnosis in hand, we had to find a placement for her in a memory care facility.  The hospital gave us until the end of the week - HA!  It took 2 more days for me to secure the placement (I’d already been searching), but then they had to perform their task in reviewing the needs.  Believe it or not, this can break the deal in many instances.  Many facilities will refuse LBD patients because of the high needs they require, despite that they charge such large fees for care and rent.  

Where Mom ended up, at St. Anthony’s, they lovingly took her in.  They had no idea what they were really receiving.

Mom demonstrated rational thought and not much of a problem in her thinking.  She was quite active and was a bit insufferable.  I would receive calls which I answered as though I were the parent speaking with the principal of the school for my naughty daughter.  

We had to get a regular doctor, as the one on deck at the time was not educated in LBD, and thought it was another term for Alzheimer’s.  I’m sure you know this did not go over well, but Mom was relieved when I stated she didn’t have AD, but LBD - to this she listened but was confused as I “educated” the physician.   Soon, though, through MediCare, we were able to locate one of the best gerontologists in the city.  We also were able to find one of the best neurologists who understood and knew of LBD, and was studying it thoroughly.  

Next came hope through a masseuse.  Due to Mom’s tremors, which happened sporadically, I realized that it might be more calming and could alleviate her anxiety were she to have some way to relax.   Now, Mom is hardly a touchy-feely being, so this was a gamble.  The therapist I found was fantastic until Mom fired her for no real reason - she was done.  

As far as other services? Well, they really had to keep an eye on Mom.  She figured out the security codes for the doors and they caught her taking walks, taking other residents out to help them go home, as well as just not being very cooperative many times.  Soon, however, Mom began to relax and grow fond of the staff.  

She necessitated 1:1 physical therapy, and would take as much time as she possibly could with the therapist - thereby keeping others from having much access.  

While the other ladies in residence were enjoying the arts and conversations, Mom was batting balloons, doing floor exercises, and just keeping busy physically.  She also wanted to keep reading - but that didn’t last more than half a year - when she just stopped, as she couldn’t recall what she’d already read.  

There were also her demands to go out and do things in the community, which was perfectly fine - until she’d verbally attack the waitstaff in a restaurant for taking too long (I guess more than 5 minutes for a meal is just Hell for some, eh?!).  

Her not having a phone was a relief for us, as this way she had limited access to call.  This was a struggle for her and many of her friends (who called me to complain that it was cruel of me to deny her access, but I was thinking of myself and my siblings who would be bombarded with calls about nothing - trust me on this, I lived it for more than a year before she was placed.  

And this goes hand-in-hand with the research.

Research suggests that people with LBD may be more functionally impaired than individuals with Alzheimer’s disease (AD) with the same level of global cognitive impairment. Loss of independence in ability to perform instrumental activities of daily living typically occurs early in LBD, including the inability to manage one’s own medications and finances. Driving may also need to be curtailed early due to changes associated with LBD, i.e. variable levels of attention and alertness, visual hallucinations, slowed of reaction time, and decreased spatial awareness. LBD caregivers need to increasingly supervise and monitor LBD patients as particular symptoms manifest themselves or worsen, including executive impairment (i.e., difficulty planning and completing tasks), fluctuations in alertness, incontinence, intrusive hallucinations, and falls.

The range and intensity of care required for LBD patient means that greater attention to and allocation of resources to assist LBD families are needed. One study compared resource use, cost of care, and determinants of cost of care in patients with dementia with Lewy bodies (DLB) and AD. DLB patients utilized more than twice the amount of resources compared with AD patients. Specifically, DLB patients used greater resources in accommodations (long term residential care), and required more outpatient care, informal care (measured by caregivers’ lost production and lost leisure time), community services and pharmacological therapy. 11 Among neuropsychiatric features, apathy (i.e., loss of motivation to participate in routine activities) was found to be higher in DLB patients than AD patients. In addition, the cost of care for DLB patients with apathy was almost three times as high compared with AD patients with apathy. Thus, apathy is an important behavioral feature in LBD.

Luckily, though, through LBDA.org I was able to locate a support group not far from my home, in which I met so many others and learned so much more.  I have, also, a supportive group at work and friends and family also demonstrate support.

While we rely on the caregivers at the residence, there is still so much to deal with  - bills, insurance, appointments, necessities (toiletries, etc), that cannot be forgotten.   So, while many days are fraught with “Mommy issues”, there are some where a clean break is necessary.  Thank goodness for Hospice and the staff!  They’re such saints.  

Someone once asked, “Why do you give her so much attention?  Does she even remember you?” I have to reply that she is my mother and for good or bad, it is truly our duty to take care of the elders in our community when the challenge arises.

It must be remembered, that “Only by the Grace of God, There Go I.”

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

Pondering

Pondering.  Mulling.  Recalling.  Trying to understand what we missed in the early stages of Mom’s LBD is always tugging at the bells of my mind (that’s an interesting image, I must say - but I’ll keep it!).  The more I read, the more I muse and think.  

As I was reading earlier in the day, I came across something that made me stop.  It had to do with dizziness, nausea, constipation and dementia.  For a few years before Mom was well underway with overt symptoms of LBD there were other indicators that we had no idea existed, nor would they be anything to which we would pay much attention.  

I can recall around the summer of 2007, give or take when Mom was at the beach house and her cousins, Marion, and Janet, came for a visit.  Her other cousin, Alice, lived up the road in Astoria and they be-bopped between her house and the beach house for variety.  I know Mom really enjoyed the visits, and when Alice came hopping into the house with her tennis racquet Mom was at the ready.   They walked down to the courts and played, but Mom tired quickly and they headed back to the house where she went down for a nap.  

There were some other things that seemed odd to both Janet and Marion on that visit, as well.  They phoned me and asked if Mom was doing alright.  I had not noticed anything that was amiss with her, just her aging, and told them.  Had we known then what we know now I may have paid closer attention and tried to figure it out.  

Yes, Mom was becoming more tired and easily nauseated more frequently.  It seemed every visit we had she would state this but figured it had more to do with manipulation (to get me to do more than I already was) and hypochondria, which she seemed to own.  And Alice (who now suffers the same as Mom with LBD) showed no signs of slowing down, other than age - and she was just an eager jackrabbit when it came to playing sports and being involved in activities, although she, too, had slowed down her participation as time progressed.  

In 2009, Janet again phoned me, and said they felt something was really wrong with Mom.  She was very concerned, but we really hadn’t noticed anything at that time, either.  It wasn’t until 2012 when Janet and Marion were, again, down at the beach, that I began to notice something was strangely amiss with Mom.  

During that visit, Janet and Marion, along with Mom, were bouncing between Alice’s house and the beach house.  Mom was truly weary.  She would phone me in the afternoon and tell me she was coming to Portland the next morning and staying until that Sunday or Monday.  Then, she would phone again the following morning and tell me she was staying.  That afternoon she would be  calling again and the pattern kept going until Saturday, (when she was originally supposed to be arriving) when she actually appeared.  

Now, I live on a “mountain” in the suburbs, and it’s about a 250-foot elevation climb in one mile from the nearest grocery store.  Mom had, in the past, gone down and picked up a newspaper and then walked back up.  She really did hate the hills, but while she would be tired and a little dizzy, she would recuperate in a reasonable amount of time.   By 2009 she was unwilling to walk back up as she would be quite dizzy from a leisurely walk down, and I’d also noticed that she wasn’t willing to go for very long walks at her house in Port Angeles, either.  I wasn’t sure the cause, but I put this to her age, as well.  

In 2012, I came home from work one day and found her collapsed on the bed in her room in my house.  She’d been there most of the day, and was exhausted from walking down the street to the store for a paper to find there wasn’t one that day.  The hike, she said, nearly killed her.  

I began to notice that she was becoming more easily tired and always seemed nauseated, as well as dizzy.  I wasn’t sure what that meant.

Today, I realize that she was suffering as the Lewy bodies began to amass on her brain.  Her blood pressure began to peak and digestive issues also began to manifest themselves inside her.  

The blood pressure was odd, I thought, as I recalled one or two times when it had crashed on her in the ‘90’s and she was rushed to the ER.  Surely, it couldn’t have reversed itself; yet this would explain the tiredness and the dizziness she was experiencing.  And, high blood pressure is also a side effect of dementia - why?  I’m not sure I can say with any reasonable fact at this time.

Her nausea, I’m discovering, has to do with another side effect of dementia - it can be caused by constipation; another side effect.   Mom has been on laxatives prescribed for this, but it’s an ongoing issue.  It could also be why she’s not very hungry lately.  She would never tell anyone as she believes it to be a private thing, as well as nothing you would discuss openly. There are those who would say they are a side effect of the medications, but she had these problems before she ever took them. And, from my readings, these would have subsided by this point; in other words, it's caused by dementia somehow.  

Had we known then what we know now would matters be handled differently?  I’m not sure.  But what I do know is that posting this might help someone who has questions that need answering.  

Just pondering.  

Hide And Seek!

If you recall, Sunday, Mom refused to arise and shine from bed.  However, the next day she was up and about as though nothing had happened.    These things happen - although I’m still searching for some answers/clues that could help me understand.  

Today, though, I thought we’d talk about a phenomenon that began within weeks of Mom’s placement at St. A’s.  While this is not peculiar to her, it is with LBD patients, believe it or not.  

Mom used to have a perfect place for everything, and before her decline (at her home) she would have everything pretty much in its place (no, she wasn’t one of those who obsessed over the perfect arrangement with spot-on placement).  She knew where things were.  

Now, with her dementia advancing, Mom has very little idea where much is, nor what she has.   She began, simply enough, with her purse.  One morning when I came to fetch her she complained that she didn’t know where her purse was.  We looked everywhere around her room.  Finally, after all the obvious places, drawers, under the bed and other furniture, in the hamper, under cushions, etc., I found it tucked under her bed pillows.   She laughed - “How could I have put it there!?” she wondered aloud.  

Well, things have progressed.  

Not long ago, the LPN, who manages the place, begged me to make a key for Mom’s room so they didn’t have to keep unlocking it for her (she locks it to keep everyone out as she believes they wander in and take things).  I told him I would, but it wouldn’t make a bit of difference - she’d put it away and we’d probably never see it again until she died.  He scoffed.  

So, I did it.  I put it on a coiley-type band and gave it to her.  I had her use it even.  The next day it had vanished and she hadn’t any notion to what I was referring when I asked about it.  I spoke to the LPN and told him.  He heaved a heavy sigh with acceptance and resignation.  

Mother’s room has since become quite the black hole for many things:  glasses, cards, videos, vases, silverware, pencils...you name it, it’s probably stashed somewhere in there and you’ll be hard pressed to locate it.  

Mom has taken to putting magazines, bags, letters, kleenex, and whatever, into boxes.  I do go through many of these and toss out the garbage (which she tells me are still useful - but I don’t believe wadded up tissues, apparently used, would be of healthful use to anyone) and figure out what to do with the rest.  

Mom hadn’t lived in Oregon for nearly 25 years so she doesn’t remember the bottle bill - all her pop cans end up in the garbage, but I believe the staff picks them out and deals with them appropriately.  

There are some things Mom does keep organized, though - Her watch stays by her bed in the little lacquered box from Japan.  Her purse is always somewhere - it’s something enjoyable to locate.   Her glasses are a challenge - every time I visit there seem to be more pairs in her drawers than the time before;  this includes sunglasses which I can’t remember her wearing at all in the past 20 years.  Dirty clothes can be found in the drawers or on the hangers- she doesn’t want them washed as she doesn’t see the need - they never get dirty, she says (HA!  They’re filthy!) so I have the staff rummage through her drawers and closet to wash as much as possible while we’re out.  Everything for the bathroom stays there - it never leaves, so that makes that rather uncomplicated.  

Mom has also decided that her little mandarin oranges need to be out of the fridge and they are to be found in the cabinets, drawers, closet, or wherever she can think of.  Luckily the soda stays in the fridge.  

There was a point when the staff requested I buy her more <ahem> private panties <cough cough> but I knew she had more than enough.  Apparently she was hiding these wherever she could to avoid the embarrassment of anyone discovering she may have had an accident or two.  

How oddly the brain works.  She asks me to fetch things from the basement for her - so I leave for a couple of minutes and come back, knowing she will have forgotten.  

They say this is considered something of an Obsessive Compulsive Disorder, but this actually bypassed my understanding.  Others call it Hide-N-Seek.  It’s pretty typical for the LBD patient.

I honestly find it a great diversion - I never know what I’ll uncover while searching for something relevant - and her reactions are always unpredictable.  But that’s for another time.   

In the Beginning? Would Recognizing the Signs Have Done Much Good?

After many months and thoughts, it would appear that the onset of LBD with Mom might be more apparent.  Yet, nothing is, as how much we take for granted and small slips of the mind may go unnoticed and unnoted.

So it may have been for Mom.

After Dad died, Mom became lost after driving me to the ferry many miles away, a drive she'd made so many times - but that was due to grief.

The time when she was driving home from the beach house and was on Hood's Canal and fell asleep, hitting the guard rail and pulling over to stop before launching into the cold and dark depths of the sea - but that was fatigue.

The frantic phone call about her printer not working, having checked the plug and everything else - only for me to discover the plug was inserted, but not pushed in fully (then it worked).

The remarks from her cousins visiting at the beach asking about Mom's health, and how she didn't seem herself - taking naps, and not being as active as once she had been.

The inability to understand her television and cable relationship, although it rarely changed throughout the 20 years she had it - and the need for me to call the cable company and internet company to fix it so she could stop going without (this would last a few days after I'd done just that at her house).  And, to make things worse, she would chuck all instruction manuals and a few of the remotes, as well.  But this was typical - she didn't see the need for them (until I asked her to refer to them).

The slowing down of her step over recent years, and the wonderment in her eyes when she discovered her rental car card wasn't American Express or Entertainment cards in the Empress Hotel in Victoria.

Were that these happened within a quick step of each other then, perhaps, we'd notice - but given Mom's inability to understand technology (even though once she'd been quite adept), and the sigh of relief when the emails (many per day) that she forwarded to us before she'd even read them stopped.

And, we cannot forget the phone calls!  One brother received 13 in 24 hours.  I was used to receiving up to 7 with denials that she made any.  It was all so very confusing!

Then there were those stories about people she shared but weren't true.  <sigh>

But, to be honest, it made bringing movies she'd be interested in easy - there were so many she liked in the past but had absolutely no memory  of ever seeing.   That's when I began really wondering, but attributed it all to her age.

She also began sleeping more - to the extent that many times I would be tempted to trot into her room and put a small mirror under her nose to be sure she was breathing.  Luckily, she arose not long afterward.

From a distance, we can see some changes that may not be obvious to someone who sees her often.   But, even if we had taken note, what could we have done?

When Mom was admitted, she was on the cusp of being too able; that changed in less than a year's time.  And, now, we are understanding and seeing so much more that we cannot dismiss it, at all.

Who knows what adventures are ahead?

Looking Back....Clues???

The other day I was walking my dogs and began to think.  Uh oooh.

It was approximately 10-12 years ago when I began noticing Mom growing a bit vague in her thinking.  Some things just weren’t adding up correctly.  Yet, in my mind, I gave it over to the aging process...whoops!

I recall bringing some videos on my visits to see Mom, some were older but she hadn’t seen them for a while, and others were newer.   She’d remark that she hadn’t seen even the older ones before and I thought it odd, but carried on, believing the viewing would refresh her memory.  It didn’t. 

Next, she began having troubles with her computer.  There was the incident where her printer wasn’t working and, luckily, before she headed out to buy a new one I came up and plugged it in - it had been introduced to the plug but wasn’t completely inserted.  We had a laugh over that one.  

There were more incidents where her computer “simply won’t work”.  So, I’d come up, as did various other people, and we’d get it running but then she’d forget.  Hence, I emailed her, mailed her, and printed out (while I was there) instructions for her.  Her issue, now, was she would put them all in the round file, as she hated clutter and thought the instructions unnecessary.  So, she called in experts and sent it into the shop.  Still, she couldn’t manage to get it to work. 

These may have seemed small at the time, but they progressed.  There was the time when she caught my house on fire.  I had taken the dogs for a walk after dinner, and brought out the cooler for her to load her food from the refrigerator (she’d been a while at the beach house and spent some days at mine on her way home.   So, we put the food from the cooler into my fridge to keep it fresh, against her objections that the cooler would suffice for 4-5 days - another clue).  When I returned 20 minutes later, flames were leaping out the kitchen window, smoke was billowing out the front door, and she was standing in the hallway with a bowl of water saying, “I’m so sorry!”  Fortunately, I was able to extinguish the fire with baking soda, but the cooler had melted all over the stove, the counters, the floor, and the sink was melted.  Smoke damage was throughout the house, but there was no structural damage.  

What she’d done was put the cooler on the stove as it seemed to have more space to open the top.  Inadvertently, she’d turned one of the knobs through  a bump or something while filling it.  Then she left it there to go into the living room to do a crossword.  It wasn’t until the smoke was filling the air and the detector had gone off that she realized something was amiss. 

After, she denied the incident to me, telling me it had been my negligence for turning on the stove to get it ready to make tea for when I came home.  Wha----?????

There were also times when she began to create stories about people - stories that weren’t true, but she believed them to be so. This was evidence of the hallucinatory state, coming from her dreams.  Soon, these stories carried much weight, and they became the norm - with more embellishment even though none held any merit to those in the know.

Then, eventually, came the realization of her not cleaning the house, the dishes, etc., but her house still seemed to be managed, even if the dust collected more and more.

Of course, this all grew to a head when her confusion increased to a point it could no longer be unchallenged. 

But it began with little things that one normally tosses aside as “just one of those days”.   

It does make one ponder a little more when little things begin to occur….

Smell, Taste, and Lewy Body Dementia

One of the symptoms of LBD is the loss of smell, and taste.  This occurs, typically, very early in the onset of the disease.

Now, with Mom, this was difficult to figure out, as she never was one to comment on smells, unless they were overwhelmingly pleasant, strong, or odious.

One memory was a hike we took, one day, over 20 years ago, from Deer Park to Obstruction Point in the Olympics.  Now, this was not a rigorous hike, but one that required (for me) patience, and the ability to help Mom carry on.  At several points she would sit down and tell me, "Just leave me here and let me die!"  When I retorted with something about her being able to feed the mountain lions, she was vaguely amused, but it did help keep her going.    Then, at one point, we walked into an open meadow of nothing but lupine.  Wild lupine.  Beautiful.  We sat among some other hikers to take in the sight, and allow Mom to take a breather.  Then it hit us - The fragrance from so many of the spiked blooms was like soft-scented soap, but it wasn't overpowering; rather, it was intoxicating, and unforgettable.

Another may have been when she caught my house on fire, but it was partly the smoke detectors and the thickness of the smoke.  Looking back, she didn't really have much reaction to the smokey smell...just the incident.  It makes me wonder....

Lately, I've been more aware of the lack of smell, as I know, now, that this is a symptom.

And the other day, I learnt that taste is another factor.

This I needed to consider.

Then, it hit me.

The foods Mom likes are those she used to appreciate.

 The soda's fizz is something she can count on.




                                                   The perkiness of the tangerines

is another stimulation she gets from no other food.

  Chocolate and almonds go together to provide endorphins.

 But everything else gives her nothing, really, to relish as once they did.  She seems rather indifferent to them all.

 Perhaps the oversalting of the food gives her some stimulation in trying to find the taste, once again.













So, it's the texture and the stimuli that allow her to appreciate the foods - not the taste, any longer.   How sad and bland that all must be.....

for further reading and information, please visit:

The Scientist:  Smell and the Degeneration of the Brain

Academy of American Neurology:  Taste and Smell Disorders

UCSF Age and Memory Center

Journal of Neurology, Neurosurgery, and Psychiatry:  Asnomia and LBD

How Mom Seems to Differ With Dementia

I've been thinking, pondering, musing, wondering....what have you, about how Mom has changed in the past months.  Some of it is positive, but there are other factors that I find curious - and am looking for some answers....

Mom with her friend, Sally J.,  many moons ago

First of all, most patients with dementia seem to have a personality change.  They switch from one demeanor  to the opposite.  Most become angry and mean.  Not Mom.  She's grown sweet.  What am I implying?  I'll leave you to your own devices.      There are those in her cottage who seem quite sweet and gentle.  There are others, too, who are not ones you'd want to spend a great deal of time with, too.

Secondly, there is the weight gain.  Mom has gained quite a bit.  According to all the reports and statistics I've read, the majority of patients tend to lose weight.  But, Mom's metabolism has slowed.  She has grown more lethargic and unable to spend as much time moving about as she once did.   Mom used to go hiking, play tennis, and have other assorted activities during the week.  Yet, in the past years she's grown weary much more rapidly month-by-month.  Perhaps it's been a growing trend for her;  however, the weight gain has been quite noticeable.   This is due, in fact, to her small dosage of quetiapine.

In the past year, we've seen Mom decline from wanting to take walks, go out and enjoy the elements, wanting to venture to a movie, or even go shopping, to someone who isn't quite sure what she would like to do.

She has gone from being a little-off conversationally, to someone who cannot carry much of one, unless re-directed.  She has lost most sense of time - meaning that she isn't clear what day it is, nor what month.  She does remember people, but not events.

Christmas happened a while ago, and visits fade quickly in her memory.  She does have a flickery recall, but not as illuminating as a year ago.

Last year I could count on her to be up and at the go for Mass.  Now, she bides her time, sleeping in, and not truly realizing what may be.

Last year she read.  Now, she dabbles, but to no avail.  No words from the page stick to her mind; she's happier looking at pictures in books or magazines, and sometimes reading an article, but don't inquire about the information.

She still does the crosswords, and enjoys Scrabble and Bingo!  She does love a good visit, especially from the RLC.

Her bathing, once a norm, is off and on again.

She is hiding more things in drawers, and forgetting she actually has some items.

The disease is progressing, as evidenced in the pains on her side.  This is normal.  Eventually, I suspect this will begin to paralyze her on her right side, making movement more difficult.  She shuffles, but not completely - and yet, alas, this too shall prevail.

It will be interesting to see how she does in 2015.   How great a decline we've seen this year - what will the next bring?

An Odd End to the Week Ending 12/21/2014

Sometimes it's best to just let your thoughts fly freely through the atmosphere.  Most times, though, as we're all somewhat used to, it's good to have them in a container where they're accessible to any and all.

Today's thoughts few freely - truly - and it was quite an interesting ride!

I arrived to take Mom to Mass around 930 this morning, as she's usually up and about waiting.  But, this morning I found her in her room, sitting down doing whatever she was doing.

I had brought her some goodies:  Mount Rainiers, Toffee Bars, and Rich Bars, which she used to make for Christmas time each year.  She told me to put them in the refrigerator.   I also brought her some cards from people she knew in Port Angeles, which arrived at my doorstep.

She eagerly opened them, and showed me.    Then she stuffed them back into their envelopes and she put them on her dresser.

Next, we needed to put on her stockings.  Where were they?  She told me they had been stolen, along with her slippers and shoes.  Hmmmmmm.  Where could she have put them.  Under the bed? no.  Under her pillows?  no.  In her closet under a stack of blankets?  Aha!  a slipper to match the other.  She still wasn't satisfied.

I then opened the cabinets under the sink.  No.  The drawer under the fridge?  Aha!  The shoes and the stockings.   She told me someone was playing tricks on her.  Oh well.

While I had her putting on her shoes, which she found to be a sign that Satan had possessed me, I ventured out and spoke to the med-aid about getting her medications for our outing.  Here I discovered that she had just only risen from bed.  She had been complaining of nausea and pains.  Funny.  She hadn't said anything to me.  Oh well.

So, there we were, me thinking we were on our way out - how silly!  We just got her ready to eat her breakfast!  So, I settled for a cup of coffee and helped her read the paper.  Next, she worked on two crosswords from the same paper.  Time moved on but we did not.  There was no moving her.

Finally, it was past time to arrive at Jean's for lunch.  So, we set off for that part of Portland, driving merrily through the streets, detouring around Lloyd Center and venturing through other neighborhoods.

We finally arrived to a warm greeting.  Jean had also purchased a padded folding chair for use when the RLC came to visit Mom in her room!

Jean's daugher, Jenny, and son-in-law, Aldo, were also present.  I'd brought Jean treats, as well.
One of the goals, today, was to have Mom write Christmas Cards to her friends in Port Angeles.  Jean mentioned Nancy, but Mom said she had died.  Jean showed her a card she'd just received from Nancy, but Mom pooh-pooh'ed it.  So, I dialed my phone.

Nancy answered, and I handed the phone to Mom, who thought it in bad taste to call the dead.
"Is this you? or a recording you made?" Mom asked.
"It's really me, Norma," came the response.
Mom had a few more probing questions to ensure Nancy really wasn't speaking from the tomb.  Eventually they were happily chatting away - about what, I couldn't tell you, except that not all Mom said made any sense -- quite a few non-sequitors, a few things that fell from the sky and became the topic, etc.  But it also demonstrated how strong her hallucinations and delusions can be.  Of course, I'm not telling you everything, because that would be too much.

Finally, they ended the chat.
"It was so good of her to call from so far away!" said Mom.  "That was a great act of charity!"

I didn't touch that.

So, the conversations were off.  Mom and Jean talked about family, and Mom asking Jenny all sorts of questions about her family, forgetting, of course, that Jean is her mother.

She even asked me some questions that related to me as her own brother, inquiring as to whether or not I'd visited my brother in Japan while he was teaching there and in the seminary.  Trying to help her identify me was somewhat confusing for her - but in a minute she would know me, and think I was talking nonsense.  <sigh>

She wrote some cards, after lunch, and we departed.

On the way home, Mom asked me, "If you were married, and owned your own home, would you rather be married or single?"
I wasn't sure she realized the question so I parroted it back to her.
"That's right," she said.  "Which?"
"Well, let's try putting it this way - I'd rather be single than marry the wrong person."
"That's a very wise response," she stated.
Whew!

So, we got back home, and she was still going on about the phone call with Nancy.  Will she remember tomorrow?  Will she recall any of today?  That's a tough call.

Yes, she did ask about Dad and his doings recently, and of her parents.  Luckily I can figure out what to say quickly, and she accepts it.

So, a promise to take her to Mass on Wednesday evening brought a weary smile to her face, as she began to wind down for a nap.

I've a feeling this is the beginning of a whole new stage.

A Day In the Life....A Visitor's Observations of Mom Today

The following is a note sent to me of the visit by the RLC, yesterday, with Mom.  I edited it a bit, and put into italics those things that will help put the reader at ease with more of a knowledge base..

Connie and I got to St. A's just after 1 pm.  Norma was glad to see us. 

 We settled in, and saw Norma was reading mail from friends.  I assumed they were Christmas notes; no, from March and October. She again showed me a note from Nancy Moore--"It's too bad she died. She was a good person, and wrote such interesting letters."  We went back and forth a few times, insisting that Nancy is alive,.  She did not back down; we just went on to other things.  (Later, when we were "Scrabbling," Mike, the Cottage Director) brought her what was probably a Christmas message mailed to her. We did not see it. But she said it was from Marion--which one?- there is a cousin Marion, and a granddaughter, Marion)

I asked about her appointment with the doctor: "I thought you were going to the neurologist on Monday."  No recall at all. End of subject.

 Mom said that Tom, Ivan and Bob (Their late husbands) were going to get together this evening, and the ladies could do something else. As usual, we agreed that sounded nice.

And her grandma and some other older ladies were going to get together--again, that sounded like a nice thing to do.

I commented that I noticed she was wearing her stockings.  She said she put them on, (did she?) and "Sometimes the ladies here want to put them on me," meaning the caregivers.

Norma was pleased to show us a little plastic crib scene she had painted. That was definitely a pleasant experience.

Scrabble was fun, with  Mom winning. Connie usually keeps score, bless her heart.  We did use the Scrabble dictionary to be sure of two things. Sox is okay.  Vy is not; vying, okay, vie is present tense.  I'm grateful for that little book.

Sometimes when we start to play, Norma asks how many tiles we use. Seven,of course.  Later, she might have 9 or 10 tiles. "It's okay, you can use as many as fit on the board (little  individual holders)."  As we again differed on the score--counting, with me stating what the rules say, there is scorn for anyone who keeps to the rules. When she questioned the rules, I told her I had a typed list of rules, so she read the pertinent ones. But still whatever she wants to do is fine.I don't know if that is old habits or new confusion. No one gets loud; we just don't pursue it.

Norma is still  good with making words,but not so quick with counting score.

Today there were several references to a living Tom; I kind of envy that. We never correct that kind of hallucination.

 

It seems that this morning Mike Manning came into her room with a lot of clothes she did not recognize. He set them on her bed; she would not let him put them in her dresser (don't know if he was going to).  About 2pm someone came in with food,  and she did not need any. (No idea there; we did not ask the caregivers.)

As Connie and I donned our coats--after 3:30--Norma put on her jacket.  Connie and I reminded her that we are not relatives, and cannot take her out of the building.  She said I could tell them I'm a  sister-in-law, but I told her that would be a lie. She looked serious, so I hustled out, after a quick kiss on her cheek; Connie did the same, and we walked fast after catching Sergio's (a caregiver) attention, and asked him to help if Norma insisted on going with us.  He just smiled.  I thought I heard Norma's voice, but it was not loud.  Don't know if she actually started after us or not.

Since the hallucinations are real, Norma does not appear upset or confused.  Today was a bit more than other times.

I asked Jean if I could use this as illustration of what others see with Mom.  As Connie and Jean see her regularly, and have known Mother for more years than I have lived, they can surely see the differences.  

I truly appreciate their help and time with Mom.  It really does make so much of a difference!  

Thank you, Ladies.