The Art of Mommy Moodiness or The Week Ending 05/31/2015

Interesting week this was.

Mom went to BINGO, did her recumbent bicycle, her upper body exercises, and took some walks.  These she did with a bit of refusal, but then decided to do them.  Her back, she complains.  There is no doubt she has some back pain; however, most of it is due to her unwillingness to move much unless coerced.

Yes, last weekend she spent her time in her room, in her chair or in bed.

This weekend she was up and about doing her normal day-to-day doings.  Nothing appeared out of the ordinary

Earlier in the week, though, Jean came to see her sans Connie who is still recuperating but on the mend.   She wanted to have Mom write a card (with her help, of course) to Connie.  Mom agreed, and an hour and a half later it was done.  Whew!  That woman has the patience of Job!

Jean wrote the majority of it, but what Mom wrote was very hard to decipher; in fact if you were to read it and translate it made very little sense, indeed.  Yet, her heart was in it and this was the important element.

Finally, Jean wanted to take Mom outside to enjoy the flowers she enjoys so much outside her window.  This took another twenty minutes (probably longer, knowing Mom), and they were able to take a brief walk and sit on the benches and in the gazebo, where they chatted.

Jean commented that Mom's voice, when reading, is quite strong and confident.  However, as soon as she is speaking for herself it becomes a stifled murmur, which is quite difficult to understand.  This I've seen, but Mom tends to have no real issues with me.  Hmmmmmm.

So, this afternoon my brother went to scoop her up but Mom had taken off her socks.  So, they needed to put them back on.  Next, she decided she needed to change her clothes.  It wasn't that she was unprepared for his entrance but Mom has this propensity to make decisions about things willy-nilly (usually when someone comes in to take her somewhere and there isn't a great deal of time to bluster about).  Finally, after nearly 40 minutes, he was able to commandeer her out the door and into his car (My comment was that now he has more of an idea of what I experience, except she isn't quite so quick).

At dinner she entered and when I came to greet her she stated that I was simply worthless.  Wherever that came from I've no idea.  But, I sat near her and we chatted for a bit.

Now, mind you, holding a conversation with Mom is nothing ordinary.  There are huge shifts in thought every few words, so you have to be on your toes.

She wanted to leave so she could lie down at home, but we kept reminding her that we were eating dinner there.  She had wine (actually lemonade with wine splash) which seemed to keep her happy; she wanted to know where this type of wine was sold and how much - that made things a tad brighter.

When it came time to leave she was not very willing.  She went from the table to the sofa, then, as we finally were able to bring her back to her feet, she demanded to find a bed on which she could lie.  This wasn't an option.  She became a little defiant, and as I was trying to take her hands she scratched me and began to fight me.  Finally, my brother put his hand on her shoulder which seemed to calm her and I took her hand and gently led her to the car, where she sat and stated that she needed to go back in and rest.  So, I put her seat harness around her and we took off for St. A's.

On the way home, she had forgotten about the earlier experience within 5 minutes.  She wanted to know if I'd be staying with her that evening or in my own bed.  Duh.   She wasn't completely happy.

We arrived at St. A's and entered the main hall.  She looked down the corridor which led to North Cottage, and she asked where we were.  I told her.  She stated she had never ever been down this way before.  I told her it would be a new adventure and a short cut to her room.  She obliged by coming with me.

As we entered North Cottage she went to the first sofa and sat.  She stated she was just too tired to continue and wanted to just stay there and rest.
"Sleep, you mean?" I inquired.
"Oh, yes.  I can get to my bed later," she remarked.
So, I went over to the med-aid, Susan, who was working in her office and she helped me lug Mom over to her room (now, why is Mom so cooperative with everyone but us?).
   She had some Vicodin, and I left her to get some sleep.  She was happy.

The question that now arises is whether or not having her for dinner is really in her best interest.  She has no problems leaving from Jean's, but from my brother's it seems an Act of God to get her out the door.   Of course, he takes her for wonderful Sunday drives first, so could it be the stimulation that wears her down? or does she just assume that since it's his home there's not any reason for her to actually leave?

I believe it has something to do with it being us.  With others, she doesn't wish to seem impolite or show her true colors - with us it's a different story - we owe her and must do her bidding no matter what.

So, do  we continue?  Stay tuned! 

Parkinson's and Lewy Body Dementia - Common Traits and Differences

We already understand that Alzheimer's and other assorted dementias are different from Lewy Body Dementia.  If you recall, Alzheimer's Dementia (AD) is caused by the misfolding of the brain along with Tau Proteins and Beta Amyloid Proteins.    Thus begins the deterioration of Speech, Cognition, along with other traits.

Lewy Body Dementia and Parkinson's Disease (LBD and PD, respectively) are caused by misfolding of the brain along with the presence of alpha-synucleic acids.   Thus, treatment for these two diseases require other medications than for AD, and the reactions to the medications will be harmful - the LBD patient could suffer severe trauma from regular AD medications, so it's best to know and understand what form of dementia you are dealing with (this is why it is greatly recommended you have both a knowledgeable neurologist and doctor on board).  

But many times LBD sufferers are diagnosed with PD first, and later are diagnosed with PDD (Parkinson's Disease Dementia).  In my family, I had an uncle diagnosed with PD and later it would appear he began suffering from some form of PDD.  Then, Mom and her cousin were both diagnosed with LBD - both women (which is not common, as LBD is seen primarily afflicting the male of the species).

Also understanding that either of these diagnoses could be genetic, I began to wonder what the actual differences were.  After all, we see Michael J. Fox who is suffering from PD and continues to perform.  But had he been diagnosed with LBD how would he have fared?

So, what is the basic difference?  From reading, this is what I have come to understand:

With PD, the Lewy Bodies affect the brain cells in the basal ganglia and substantia nigra, which are located deep within the brain.   Herein the cells send dopamine to the nerve cells which control movement and coordination.  As these cells die, the messages of dopamine become confused and weak.  The Lewy Bodies attach the brain from within and begin their assault outwardly.

With LBD, the Lewy Bodies cover the cerebral cortex of the brain and begin hindering cognition, thinking, loss of judgment and other symptoms, located below.    Here, too, the messages of dopamine are also garbled, and as the brain begins to shrink and deteriorate, more and more attributes of the disease become clearer.

Of course, LBD tends to also have PD-like symptoms, as well, with movement - including, but not limited to: tremors, shaking, balance problems, coordination issues, etc.   But the shrinkage begins on the outer part of the brain while there may also be Lewy Bodies present in the deeper cells of the brian, as well.

According to the website Barrow Neurological Institute, the following are the symptoms of both LBD and PD:

LBD:

• slow thinking
• memory loss
• difficulty with learning and abstract thinking
• fluctuating course
• visual hallucinations
• sensitivity to some medications
• physical symptoms of Parkinson’s disease

PD:

• slow thinking
• memory loss (usually less severe than in Alzheimer’s disease)
• difficulty performing familiar tasks (driving, handling finances, etc.)
• difficulty with learning and abstract thinking
• poor judgment
• loss of initiative
• changes in personality
• changes in mood and behavior
• physical symptoms of Parkinson’s disease

As you can tell, there are similarities, but with LBD (although the list seems shorter) there are more symptoms.

With Mom, all these symptoms are present, but the coordination elements are a bit stalled, as they tend to develop slowly (or so we hope), but there is tremoring at intervals.  She has physical therapy each day which may be keeping these elements at bay.

There is always the chance, too, that PD will become PDD (which is the same as LBD, but with the Parkinson's diagnosed first), but with technology advancing on dementia, how soon will we be able to live longer, fuller lives with the conditions - or is that an ethical question?

The Early Signs of Dementia - What to Look For

You don't see it coming.

You believe it's simply a natural progression.  Memories become confused and you're left wondering - "Was I thinking something else happened?"  You begin questioning yourself; after all this is your parent and you've trusted most of what they say for your entire life.   You just go on believing something will pop them back into sync.

Next come small incidents.  Perhaps it's getting lost because they've lost focus, or - as it was with Mom - they've been chattering away while driving and not paying attention to the road signs.  Perhaps it's a fall or leaving something on the stove and causing a fire - there are many that could be considered, but they're nothing completely cataclysmic (although a fire could be).

Soon, you realize Mom isn't doing the things she once did;  she has begun to lose interest in most of the activities in which she was once engaged - Bridge, Pickle Ball, Tennis, Hiking, Book Groups, among others. She finds excuses that might seem normal.

She begins sleeping more and more, not being able to stay awake as once she did.     There were times I nearly went into her room (while I was visiting) to place a mirror under her nose to see if she was alive.  She obsesses over tiny matters when she's awake, but isn't always willing to follow through with whatever activity she's been pushing (Christmas 2012, Mom kept wanting to go shopping for gifts, but was unwilling to go to the stores).    And you begin not telling her you're coming for visits until a few days before, as she confuses the dates and keeps phoning wondering what time you're leaving that day.

There is the repetition of questions to which the response is always the same - but frustration crawls into your voice as you wonder why you're required to answer over and over again and again.

Then the calls begin.  "What is your father's cell phone number?"  "Do you have your grandmother's phone number?"

There is a gentle but definite change.  It's not depression, although the doctors are beginning to treat the condition as such, not wanting to rule anything out.  But the apathy has grown and she knows something is wrong - but she won't be forthcoming with all the information they require (she follows a 'need to know' philosophy).  She hasn't informed them her mother had Alzheimer's, and her thinking has been confused while she's finding herself shaking with tremors that have gradually increased, but are not constant.

These were the signs, and until the hallucinations began we fought to keep thoughts of dementia out of our minds.

So, what are the early signs?

Along with mental confusion or problems with memory,  dementia also holds fast to one or more of the following:

• language
• communication
• focus
• reasoning

There may also be subtle symptoms of short-term memory loss.    At first this may seem benign, but soon the ugly head will rear itself when this is realized not as an anomaly but as something permanent. 

 Difficulty finding words is another sign.  When speaking and conversing with others hits obstacles and the speaker is not at a loss for words, but simply cannot locate them, this belies another symptom. 

Difficulty Performing Normal Tasks is another warning sign.  Mom was never a great housekeeper, although her house was usually kept in relatively good order.  It wasn't until nearly 10 years ago I began noticing she wasn't dusting very often nor did she seem to care.  She began rinsing her dishes and putting them back in the cupboard if she thought this would do the trick.  How often I found mugs with small traces of coffee in them, or milk on plates or bowls.   She would defend this by telling me that dish soap was toxic, and her good friend, a former chemist, had told her such. 

Apathy begins to creep in.  Soon Mom began to not really care about anything much, as I stated above. Her only concern was for herself (which wasn't out of the ordinary - a narcissistic personality would define her, for the most part), but it was her not wanting to do very much.  Of course, when push came to shove she did activities that she believed would be interesting or stimulating and she would have someone to share them with.

Confusion becomes the new normal.  Remember the story I told in earlier blogs about her not knowing we were at her house during Christmas?  She thought we were at our old house in Portland, then we were at my house, and she refused to believe we were at her home in Port Angeles - she accused me of trying to confuse her.  That's what it's like. 

Difficulty Following Story Lines becomes frustrating.  Mom began to love going to the IMAX in Victoria as it was comfortable for her to "rest her eyes" and she could understand the story of the documentaries.  Soon, though, it became obvious she understood and retained only some of the photography rather than the thrust of the presentation. 

Losing Sense of Direction began to occur more and more often.  My brother tells of a day when Mom went to see her broker.  She drove around and around looking for his office, and it was right there.  The broker called my brother out of concern when he observed the phenomenon.    

This also includes having difficulty following directions, as well.  Given a simple task and told to follow the instructions Mom felt lost rather quickly, not knowing what to do next.  She would complain it was too technical for her (even though it was usually something she'd been doing for years).  

Repetition finds its way into conversations and activities.  So many times Mom would wander back and forth looking for something she already had, or she'd need to check on something.  This is a form of obsession - I'm not talking about thinking someone left the iron on, but checking for letters or items of clothing.  She would even begin checking her answering machine several times in the evening, believing someone may have phoned and she'd not heard. 

Difficulties with Adaptation is another hallmark.   Mom didn't savor the idea of uprooting herself to move to Portland when we first confronted her.  This was a tad odd, as just a few years earlier she began to play with moving back to Portland.  This was short-lived, though, much to our relief (at the time).   She did not adapt well to the hospital in Seattle (London, she believed and did not adapt well, at first, to St. A's, but after a bit she began to make herself comfortable.  She still speaks of moving home, but this is quite limited and infrequent.  

There you have it.  Hopefully, this will help someone somewhere sometime.

A Very Strange Thing Happened On the Way To...or The Week Ending 05/24/2015

This is a week with some ups and downs.

Mom has been exercising.  She is using a recumbent bicycle for her legs, doing upper body strength training, and walking.  She's agreeing to go for short walks, now.  Fancy that!   I also learnt that it is quite a distance to the BINGO game and she insists on going every day it's on, and she walks there with no problem.

It's been noticeable how much more easily she maneuvers about; even rising from chairs or sofas has been less of a struggle.  I believe it helps her attitude a bit, as well (let's pray).

On Tuesday, Mom became entangled in a little brouhaha.  She and another resident were together in the cottage kitchen (doing God knows what) and the staff began to hear some not very nice words emanating from the area.  

The staff came in and found Mom and Gertrude (not her real name) trading threats.  Now, Gertrude has been known to say things that can get such an incident started.  So, the staff carefully began to turn her and lead her away from the incident.  As she began to leave, Mom gave her a (not soft, and not hard, but the kind to get your attention) slap.  Gertrude whipped around and punched Mom.  Enough said.   I doubt Mom will remember this, but it would be interesting if she did.

Wednesday, Jean came for a visit.  We discovered that Connie had been in hospital for a few days due to the injuries suffered when she fell nearly a month ago.  She stated that she was having moving headaches (they weren't centralized in any one area, but kept shifting about in her skull).   As she spoke to her son she began to garble her words and he phoned 911 and had her taken in.  Test results showed she had blood on her brain.  We're keeping her in our prayers and thoughts at this time.

Jean wanted to take Mom outside to enjoy the gardens, and Mom was agreeable.  However, it took her nearly 90 minutes to ready herself in order to get outside.  This came from several readings of cards, letters, articles, and thinking of clothing items to wear when they went.   When Jean told me I had to laugh - "Now you know what I go through many Sundays!" I replied.

When Mom reads, her voice is commanding.  Then, when she speaks her voice becomes nearly an inaudible soft murmur, Jean reported.  I see the same thing until we're out in the community and her voice grows stronger.

Saturday it seems as though Mom was quite tired.  She really didn't want to get out of bed and refused to come out of her room.  Sunday was much the same, but she did bathe.

I was unable to fetch her today as I have been feeling under the weather and didn't want to pass anything along to her.  But, she is certainly keeping everyone on their toes, and staff does delight in telling me the latest quirks she develops.  It's good knowing they enjoy her and have grown to become as a family for her.

Knowing When to Choose the Option of Memory Care

Remembering the hellish nightmare that happened 2 years ago sometimes gives me pause.

I consider the options that should have been available to us, but the doctors were adamant - Memory Care!
Mom was on the verge of being in the right spot with memory care, but she could also have mistakenly been placed into a foster care or assisted living facility, which would have been tantamount (at that time) to arresting Osama Bin Laden and putting him on house arrest - it simply would not have been successful in any notion.

Part of the problem is that, sadly, most people in the field still don't comprehend Lewy Body Dementia;  they seem to stick to Alzheimer's and put LBD under the umbrella, even though it's on a bench across the park path.   I was cautioned of this when I began seeking another physician for Mom - I was told that one of the services would come to assess her and would undoubtedly find her better suited to an assisted care facility or foster home.   So, I began working things out and made some calls.  Fortunately nothing stopped us.

Everytime I go in to her facility I see family members visiting with their loved ones.  There are those who are "dumped" by their families, for whatever reason, and this seems unconcienable.  However, the staff and many of the other residents become their kith and kin, despite their loneliness.

I do remember thinking it might be best for Mom and her next door neighbor, Charlie, to condense into one house and rent out the other, but both Charile and Mom thought it an awful idea.  Charlie said something about homocide and Mom said something about not wanting another person to care for (when it was she I was worried about).  

Next, I thought we should find some Visiting Angels to come help her with some chores, to take the angst out.  When I mentioned this she scoffed and told me they wouldn't get past the front door.  She took this as an affront to her indepence and capabilities.

I could think of nothing else.

When she was remanded to the hospital for evaluation I did a self-inventory as to whether or not I could survive the seas of taking care of Mom - she had seemed completely lost without me when I was about; I had no peace during those last months, and it was obvious she needed something.  Mentally and psychically I wasn't ready or up to the job.  My brothers were very good about helping me see this.

So, then came the only option - Memory Care.  This was actually easy when I focused and locked in without really giving it any emotional power.  After moving her in, and taking care of everything else, that's when the shoe fell.    It's much better now.

But I hear people  who are falling apart and cannot fathom placing their loved ones in a facility.  

What are Their Options? 

1.  Adult Day Care.
     This is actually a wonderful way for you both to take a vacation from each other.  They have lots of stimulation, food, and activities to occupy them, while you are able to meet with friends, shop, or just go home and sleep and relax until pick up time.

2.  In Home Nursing Care. 
     This, too can give you a break.  You might even have someone who spends the nights with the patient while you sleep in another room;  this way you might be able to get a good night's rest.   This could be expensive, but MedicAid may help.

While the above two might provide some help, they will not provide the consistent means to monitor and care for the patient.  When your health and mental well-being are faltering, you've really not much choice.  I've seen many people heart sick over making such a determination, and they spend a great deal of time with their loved ones, and many times they begin to heal themselves.  That's why the following two options are ones that many begin to investigate with much fear and trepidation:

3.  Assisted Living.
     Oh yes.  This would mean moving them away.  While they're still independent this is a good option - insofar as many daily routines.  However, when the patient becomes incontinent, or begins to have troubles with movement, etc., then this option is off the table.    This can be expensive!  but depending on the package and the placement, you might be able to find some help through insurance or MedicAid.   This is also an option when the patient begins to lose balance, this may also be an option.


4.   Memory Care.
      There are some wonderful placements out there; I'd have to admit Mom is in one.  Many can be quite expensive - I know a woman who's husband's placement in just Assisted Living is more than twice the amount spent on Mom's care per month, and she is quite unhappy with what she's finding.  I'd hate to know what she may end up spending on Memory Care.
      Memory Care is the last resort, in most cases.  However, if they provide good palliative care, and tend to all the residents' needs, then you are doing quite well.  They do compete with one another, and this is a good thing in many respects.
       I see all types of activities in Mom's care facility.  They have freedom of movement, lots of light, wide-open spaces, a bountiful garden with benches and space and a path to the other cottage, should they choose to wander in and take a gander.

When is it time?

When you are at risk of becoming ill and can no longer care for yourself, let alone another.

I hope you found some help in the above, or it began to help you think of other options which could help.  

Grumpy Cat's Mom or The Week Ending 05/17/2015

A fairly pleasant week.  But the weather played games as it went from warm to cold, blue to grey, sunshine to rain as the wee progressed.  But this evening it was quite pleasant and warm;  one would believe this would make certain people (ahem) more agreeable.  Ha!

On Wednesday, the RLC came for a long visit.  They relished in Mom's crosswords, trying to help her solve various clues and marveling at her ability to focus and complete them so well.  They spoke of bygone times and people they knew.  For some reason, Mom recalls more for Jean than she does with us.  That's fine, I still hear about it.

This evening found Mom rather tired.  My brother had driven her up the Columbia Gorge to Cascade Locks and then across the bridge to drive back on the Washington side of the river.  She remarked that it was very beautiful and relaxing.

Then she began to tell me about the work that was being done on the brown window sashes at her home (her sashes are a light khaki in her room - she'd never call them brown).  Apparently there was quite an ordeal.  Upon returning, I asked her about them and she told me I was imagining things, and that no such thing had ever occurred.

Before dinner, we engaged in some light banter.  My brother told a joke, my sister-in-law told a joke, but Mom was upset that these jokes weren't funny and the one my brother told was unkind (he told a joke about a proton...no one could be offended).  This continued, and she was unable to find much amusement in anything, nor any joy - in fact, it was as though we had our old mother back - one without a sense of humor who found her joy in chastising anyone who could find anything amusing.  She contradicted nearly everything that was said, despite our speaking on certain articles and research we'd read during the week.  Nothing we said went without criticism.  Ah, Mom.  However, she wasn't able to actually make coherent her arguments as they segued into statements that had nothing to do with anything with which any of us could relate.

We spoke of people we knew and gave updates, which she found offensive as these people should have been made fun of.  I would feel some guilt, however, there was nothing said that poked fun at anyone, just news and we spoke of how good it was to hear such good tidings - this nearly set her off.  Hmmm.  Comprehension and delusions seemed to be mixing with each other.

She sipped on her lemonade, which we finally spiked with some white wine and she seemed content.

When she stood for dinner the pain in her lower back overtook her and she let out a howl.  A few steps and sitting down on the couch seemed to help ease the suffering.

Later, I realized that her ability to stand and move had improved since last week.  I've a feeling she's walking and doing more exercises with her lower body, lately.  Must investigate.

She ate well  and then began hacking.  My brother told her she should stop smoking (a habit she never acquired) and she had a few words for him.  Then she went to the loo where the hack attack continued and concern for her health ensued.  I explained that there was a good chance that this could be the first stages of congestive heart failure which may be the path she takes to her end.  But we don't know.

She came out and a few minutes later had no recollection (or one that she was willing to admit).  This is difficult because Mom would always deny anything (even if it was smacking us all in the face) just to make her appear faultless and strong.

On the way home she inquired about my mother.  "Where does she live in Port Angeles?"
"Who do you think my mother is?"
"You know.  Stop playing games with me."
"Well, who am I, then?"
"You're my son."
"Then you know where in Port Angeles my mother lives."
"What are you talking about?  I have no idea.  That's why I asked you."
<sigh>
We passed a Franz bread truck with 3 trailers.  Mom thought this an excess of trailers to transport wood.  I told her it was bread, not wood.  She said it was both, naturally.
"So they make wood and break?"
"Of course."
"And you don't like the bread?"
"Not particularly."
"Is it because it's too crunchy? or is it the slivers on the tongue?"
"No.  It's too common.  There's too much bread, already."

And so it went.
As I delivered her to her room she sat down.  She was convinced my brother had given me her watch, but I found it in the lacquered box next to her bed.
"Oh, what a smart person you are!  Thank you!"
Then I took her hand and kissed her on the head.  She ripped her hand from mine.
"Act like an adult!  You don't grab people's hands like that unless you're someone's idiot child!"
"Love you!" I retorted as I left.

Note to self:  Make call to St. A's about her pain, and inquire about exercise.   Possible Doctor Trip in near Future. 

Why Memory Care Works for Mom

I remember years ago Mom would always say, "If I ever become mentally frail, or something happens, I want you to swear to me you'll never put me into one of those places."  She meant a nursing home/memory care facility.  "They're just places where people dump their parents and never visit them, and take away their will to live!"

 Honestly, those words still haunt my world.  Not as they would had it been many years earlier but in a different fashion.   Now those words haunt me because I realize it would have meant my own mental and physical destruction to have her live with me.

 Don't get me wrong.  I love my mother,  not only out of fealty, but also because, for better or worse, she is the one who mentored my brothers and myself.  She was a force to be reckoned with, and can be still.

I recall watching movies with her in which the mother was smothering and controlling.  At one stage, Mom would comment that the woman was going to make her spawn weak, but then as she grew older Mom saw nothing wrong with such behavior.   This put dread deep into my very blood, as this would be what Mom would become if she hadn't already.

Perhaps her power grabs in the latter years seemed reasonable to us from her earlier behaviors and they held no real concern as this was just who she was - demanding, annoying, bitter, and controlling.  A visit from her would be exhausting as you never knew what type of manipulation would come with it.   A change of a major plan for any reason meant that any plans made on my part would be canceled to accommodate her whims; it didn't matter if this cancelation was on her part or someone else's.   Our lives were to serve her wants.  <sigh>

Approximately 10 years ago she began suggesting I sell my house and buy a home with her in the Portland area that we could share <shudder>.  I could have a small basement apartment and we would do everything together.  I told her I'd rather stick sharp blades in my eyes.  She replied that I just didn't understand how much fun and wonderful it would be.  The truth is I did understand how wonderful for her it would be as I put my life on hold for her.

After she caught my house on fire (which she vehemently denied but demanded I thank her for the new kitchen - welcome to the Mater Logic) this truly became a no-go idea.  My brothers were on tenterhooks when she visited as they worried about the safety of their own homes and the aftermath.  Mom harangued me for weeks, as a third of my house was gutted and my dogs and I were forced to move out for over a month, because it was taking too long for the problem to be remedied.  Finally, on Christmas Day she paid a visit and saw the empty space with the freshly delivered cabinets in their boxes.  This seemed to stop her in her tracks.

From then on, there seemed to be a slow slide downhill.  I was beginning to realize that there was a very good chance I would need to have Mom live with me, or make a life choice of moving to be with her.  Neither option seemed viable, but then I've always believed that there is always the adaptable component of being an animal, and sometimes things work out for the best.

People were speaking to me about Mom's driving.  "Take away her keys!" they'd tell me.  Ha!  She'd not only walk down and get another set, but she'd never speak to me again (despite how she treated me there was something about being disowned I liked less)!

Then the miracle occured.  I received the final call from the doctor telling me she needed to be in observation as her state of mind was not one that could be left unchecked.  She was no longer allowed to live on her own.  This hit me like a ton of bricks.  We had already arranged a consult with the doctor (my brother and I) and as the time progressed that week, and I spent time with Mom the realization that she couldn't come back to her home was imminent.

My brothers urged me to find a placement in a facility for her, as did the doctors at the geri-psych ward.  I sought those which I believed would be cost-friendly, would take MediCare if necessary, and had open spaces, as well as being Catholic.  To be honest, the choice here, in Portland, was limited.

Luckily, God looked well upon us as I was shopping.  I found a place at St. Anthony's that was open, well-lit from sunlight and lights, big garden, space to move, a good sized room, and very friendly staff.  The price was lower than anything else I'd seen, and I felt at home.  I knew Mom would, as well.

As time ticked on Mom began to settle in.  She had activities, and I knew she was safe.  She wasn't driving,  she wasn't near stoves, or anything else that could ignite, and there were activities to keep her mind, body, and soul together.

Despite Mom's "mean as a snake" demeanor when she first arrived, the staff found her easy to work with - except when she was trying to help out.  And, I was able to teach them how to speak with her and gain her respect if they wanted to have her do anything.  It worked.

Mom has a routine she follows.  She has no concept of day, month, or season.  She is able to relax and not worry about much.  I know she puts up her dukes once in a while, but knowing she's safe and content is more than enough.

Coming Up....When Decisions Need to Be Made for Assisted/Memory Care

Dementia and Its Impact on Family Dynamics

At Saturday's support group we discussed different issues which had arisen in the past month with those for whom we care.

One woman stated that she necessitated a day off to be able to spend some quality time with her daughter and away from her afflicted husband.  So, she phoned her son who had not been involved in the caregiving of his father at all.  His response?  Of course!  And he came.  She was delighted and quite surprised.

It struck me that many times we find ourselves surrounded by many who would like to find a supporting role but haven't a clue as to where/when to step in.  Families, too, may find this difficult.

In various studies and articles, it is quite common for one person to step in as the 'caregiver' of the one stricken.  The others will step back and wait for instruction or for the fatal end.  It does vary.

However, what doesn't seem to always change is the dynamic that runs a course of:
1)  Denial
      How can we be sure she really has dementia or this form of dementia?
2) Terms of care
     Where to put them?  Type of care?  The cost of Care?  How to handle situations which may arise.

I remember that we were all pretty much in agreement that Mom would be placed in a memory care facility as she was already a very demanding and difficult personality and would drive anyone who attempted to care for her to the brink of insanity, themselves.  It simply couldn't be done without human cost.   Yet, there was a call in which someone told someone else that it was very wrong for us to put her into one of those centers, and it was our duty to take her into our homes.  The respondent of the call remarked that we could, very quickly and easily, place Mom's things into suitcases and bring her to their home.  The caller hung up and never brought it up again.  Odd?  Hardly.

Of course, it's easy for one person to believe someone else should take the responsibility for care, and it should be their mission - not considering all the pitfalls, trials, and dangers that this would entail.

There also tends to be a "packing" mentality of siblings.  These may also be bolstered by the patient.   In this phenomenon, there is an uprising of tensions which were dormant for years and come to surface upon the diagnosis of the patient.  This could come from a number of issues, but it's actually quite typical.   The catalyst is usually something to do with diagnosis and care for the patient, or even the matter of how the monies are employed for their care (and then there's the estate, etc).

With our family I fell into the space of caregiver, one brother is the attorney, one brother is the accountant for taxes, and the other helps with advice, financial dealings and  in any other manner he can.  We're pretty lucky in all this.  But, when push comes to shove, I am the one who has the responsibility of Mom, overall.  This happened because of the powers-of-attorney she wisely (due to my brother) had in place before any of this had come to fruition.

Taking roles in the care of the patient is actually something that's recommended for families.  This allows the one caregiver to not have to shoulder the total responsibility and also keeps everyone in the loop as to the care and ongoing processes.

While not everyone is able to visit, Mom knows they're about - and she has vivid dreams that involves them all which keeps her heart warm.

Now, while Mom may be much sweeter and easier to deal with, she is still imperious.   To be honest, my hat is off to those who are able to care for their patient in their homes and find themselves far from homicidal mania.

There are still many questions about Mom's care and her disabilities, which I welcome as it prompts me to delve more deeply into her care and the research about it, as well.  While it still seems difficult at times to tend to her needs (both in paperwork, appointments, and time) I am still able to live and work my life for the greater part.

I know I can count on my brothers when it's important, and I know they are also looking out for me and not leaving me high and dry, as I have seen with other families.

Thank God for that!

Resources

Family Conflict in Dementia: Prodigal Sons and Black Sheep

Maintaining Relationships: Understanding How Dementia Affects Relationships and What Will Help

Family Dynamics - Facing a New Normal,Together

Dementia and Family Dynamics: Clinical Research Issues

Dementia Management Strategies and Adjustment of Family Members of Older Patients

Mother's Day 2015 or The Week Ending 05/10/2015

This week ran hot and cold with Mom.

She napped, she had some exercise,  she had some correspondence, and she had a visit from her Diaper Buddy, Jean of the RLC.

First off, Mom received word of her sister-in-law's son's death.  This she read aloud to Jean during their visit.  We had known Patti's son was terminally ill, and Peter's letter gave Mom the information.  Whether it touched home or not is a matter of conjecture, but she was happy to hear from him, nonetheless.

When Jean arrived at St. A's, she found Mom watching television in the viewing room.  Jean was amazed at how large a room it was, and the seats so comfortable.  However, whatever they were viewing was not something of "value" to either of them, so they went back to Mom's room.

Next they went to the garden and strayed around the flowers and plants.  This was enjoyable to them both.

As one of Mom's old friends from book group in Port Angeles had been in contact for Mom's address, Jean mentioned it to her.  Later, Mom told Jean that Betty (the friend from Port Angeles) was coming to get her for book group, so this gave Jean an easy out for leaving without Mom trying to ask for a ride home.

Sadly, one of the cottage mates of Mom's passed earlier this month.  Mom and Jean had known her as children.  However, there was very little, if any, impact upon Mom.  She wasn't even sure of who it was.  I tried to remind her it was the woman whose feet she'd stomped, but that memory was long gone.

This morning Mom was up and bathed and reading the paper when I arrived.  I could barely understand her when she spoke, but soon that matter was no more.  It seemed to take her forever to ready herself - she was worried that the paper wouldn't be read by anyone else, then putting on her shoes, then finally brushing her teeth.

She spoke of a phone call she'd received the night before in which a man began asking her personal questions about dating, relationships, and other information.  Mom was upset.  She stated that he also told her that they were going to monitor her bathroom habits, as well.  Well, this just wouldn't do.  I reported it to the staff who had no idea of such a man, call, or monitoring.  But they wrote it down, just the same.

Just as I thought we were ready to depart she took out her purse and decided to sit down with it and begin reading the letters and notes that were inside.  At last, nearly forty minutes later she was ready.

We arrived at Jean's house with lunch in hand.  Roasted chicken, asparagus, and red grapes.  A light but healthy lunch.  We had a pleasant chat while Jean's grandson, Marcos, visited with her, as well.  Mom was quite anxious, today, and kept wanting to leave, but I kept her at bay.

Later, Jean's daughter and her husband, daughter, and boyfriend came by for Mother's Day.  This made Mom truly anxious, so we needed to leave.

Mom was tired, but fulfilled.

I had brought her a card, but she read it and had me put it with the other cards on the counter.   Perhaps it was best that she hadn't received anything else;  for her it was a typical day and any sort of sentimentality was lost to her airwaves.  Oh well.

I began looking into the Guilt of having someone within the family who had Dementia.   While, to the uninitiated, this may seem a little odd and silly it is a great issue for those dealing with a loved one having the condition.

Trying to research this began to bring up many pages that were similar if not copies of one another.  So, I decided that instead of writing much on this one, I'd copy and paste it into the blog for more to find.

The folllowing article appears in both Dementia Today, and the Alzheimer's Society of the UK.  While it deals with Alzheimer's it is just as true as with any other form of Dementia.  In next week's posts  I will attempt to address these and further them to make them more personal; but for now, let's allow this article to speak for itself and begin thoughts on the discussion:

Dementia and Guilt

People who care for someone with dementia often talk about feeling guilty, even if others are reassuring them that they are doing the best they can. This factsheet looks at some of the issues that can cause this guilt. It explains why it’s important to deal with these feelings, and suggests some ways to go about doing this.

As a carer, you are likely to feel a wide range of emotional responses to your situation − both positive and negative. This is because although caring can be very rewarding, it is also hard work and can be extremely stressful. Some of the emotions that arise, such as grief and anger, are healthy responses to challenging circumstances. They can be useful, helping us to move forward. But other emotions, such as guilt, can be destructive, leaving us feeling powerless or ‘stuck’.

Guilt can be a very tiring emotion, consuming energy that you need for other tasks. If you have identified that you have feelings of guilt, you have already taken the first step towards addressing these feelings. The next steps are to:

• work out where these feelings come from
• realise that you are not alone in feeling this way
• find ways to develop a more positive attitude and to be more forgiving of yourself.

Circumstances that Often Lead to Guilty Feelings in Carers

Other carers seem to manage better than you do

Meeting up with other carers at support groups, or even reading theAlzheimer’s Society magazine, might lead you to believe that other carers are coping much better than you are. You may feel guilty because you feel you haven’t matched up to your own expectations, or to the expectations that you believe other people have of you.

Remember that it’s alright to make mistakes − no one can get it right all the time. There is no such thing as the ‘perfect carer’, and it’s important not to be too hard on yourself. Are you setting realistic limits to what you can achieve? If not, can you reduce any of the demands you make on yourself, or ask for any more help?

How you treated the person before they were diagnosed

Many carers feel bad about how they behaved towards the person before they were diagnosed with dementia. You may have reacted with irritation or criticism, or you may wish that you had made more of the time you spent with the person when they were well.

Try to remember that everyone gets frustrated with their partner or family members from time to time. You weren’t to know that they had dementia, and you couldn’t have foreseen what the future held. Dementia can have a profound effect on a person’s behaviour, and without advice or guidance this can be very difficult to understand.

You sometimes have unpleasant thoughts and feelings

At times, you may feel that you don’t even like the person you are caring for very much, let alone love them, and you may feel embarrassed or disgusted by their behaviour. You may sometimes want to walk away from your responsibilities, or even wish that the person were dead. You may worry that you are only caring for the person out of a sense of duty now that they seem so helpless and vulnerable. These feelings are common and quite normal, but they can be very difficult to accept and many carers may feel ashamed or guilty.

You can’t help or control how you feel about the person − but you can control how you respond to those feelings. Try not to judge yourself. Admitting to the feelings and talking them through with someone who you feel will understand is often a first step towards ridding yourself of your guilt. Remember that you are helping the person enormously through just being there and carrying out your caring role.

You sometimes get angry or irritated

If you feel angry and frustrated, you might occasionally have angry outbursts towards the person you are caring for. Many carers find it hard to forgive themselves in this situation.

Try to remember that caring can be very stressful, and anger or frustration are natural in this situation. Look for ways of expressing your irritation away from the person by finding the space or time to have a good shout, punching a cushion, or through some other outlet. If you can identify the particular situations or times of day when you are more likely to become irritated (for example, at the end of a long day), you may be able to develop strategies to diffuse the tension or get extra support. If you feel you’re about to react, try leaving the room and counting to ten.

You sometimes want time for yourself

You may feel guilty about having time to yourself. If you still enjoy things that you used to share with the person you are caring for, you may feel that you are being disloyal.

Everyone needs to recharge their batteries now and again, and it’s very important for carers to enjoy some time away from their caring role. Many carers find that giving themselves some time apart, and doing things that make them feel happy and positive, makes them more able to fulfil their role. This can improve their relationship with the person they are caring for.

Feelings from the past

The history of your relationship with the person you care for may have a big impact on how you respond to them in your current situation. If the person was critical of you or made you feel inadequate in the past, you may feel even more anxious about not ‘getting things right’ now. Many carers feel guilty that there are so many unresolved aspects of their relationship with the person they are caring for, and have deep regrets that it now feels too late to sort them out.

If you are experiencing these feelings, allow them to surface rather than bottling them up, and explore ways to relieve the tension − for example, by talking them through with someone. Try to become aware of how these feelings make you respond. For example, do you push yourself too hard in an attempt to compensate in some way for the past?

You feel you shouldn’t be accepting help

Many carers feel that they should be able to manage without any help. You may worry that the person with dementia will be distressed if you are not there all the time.

Looking after a person with dementia can be exhausting. Accepting respite care, such as help in the home, day care services, or residential care services, will free up some valuable time. This will give you more energy and may enable you to go on caring for longer. Even if the person with dementia is initially upset about others becoming involved, they may well come to terms with the idea. The first experience of separation often makes carers feel guilty and unable to relax, but in time you will probably both get used to the separation and will be able to see the benefits.

You feel you can’t balance all your commitments

For many carers, looking after a person with dementia is just one responsibility alongside many others, such as looking after their own family or having a job. It’s easy to feel guilty if you are not giving total support to the person with dementia − but it’s just as easy to feel guilty if you are not giving proper attention to your family or job. If family members, work colleagues or the person with dementia resent your other commitments, this can easily add to your sense of guilt.

Don’t feel you have to meet every demand made of you, but discuss your commitments with your family and colleagues. Give them the space to voice how they are feeling, and work together to set priorities, agree on areas of flexibility, and discuss what other forms of support might be appropriate.

You sometimes feel trapped

It is easy to feel trapped if you are a carer, but there are certain situations that can be particularly difficult. Perhaps you want to continue with a full-time career rather than devote yourself to caring, but feel that this is selfish. Perhaps your partner developed dementia just as you were about to end the relationship.

It’s important to talk this sort of dilemma through with a person outside the situation, such as a friend, community psychiatric nurse or counsellor. They should be able to help you to reach a decision that feels right for you, and to offer you ongoing support whatever decision you make.

You’ve decided that the person needs to move into residential care

Carers often feel that moving the person into a home is the ‘ultimate betrayal’. You may feel that you have let the person down, or that you should have coped for longer. You may have previously promised the person that you would always look after them at home, and now feel forced to break that promise.

Talk this through with someone who understands, and who can help you come to terms with your decision. Remember that any promises were probably made in a completely different situation, when you had no idea of all the strains and stresses that lay ahead. It may help to talk to other carers at a support group, but don’t let others who are still caring at home add to your sense of guilt. Everyone’s situation is different.

The move to a care home doesn’t need to mean that you give up your caring role completely, unless this is what you want − it’s just a different way of caring. Your involvement can still be very important. Some carers feel that residential care helps them to have a better relationship with the person, as their time together can be more special, less stressful, and more like it used to be before the constant worry about practicalities.

The person’s death

When someone with dementia dies, many carers say that they initially feel some sense of relief that the person is dead. Then they feel ashamed or shocked that they have had these feelings.

Relief is a normal reaction. Many carers go through much of their grieving process throughout the illness, as they notice each small deterioration in the person as the dementia progresses. Talk to people about your feelings and remember that bereavement can cause a wide range of emotions to arise, and there is no one ‘right’ way to feel when someone you have been caring for has died.

Tips: Keeping on top of difficult feelings

Caring for a person with dementia can feel like a series of small losses. Each time a loss occurs, you have to make another adjustment, and carry on. To survive the caring process, you need to look after yourself and not judge yourself too harshly.

• Tackle your guilt − If you are feeling guilty, try to work out why. You will then be able to make clearer decisions about what is right both for you and for the person with dementia.
• Talk things through − Suppressing pent-up emotions can be damaging. One of the most important steps you can take is to talk about your feelings − whether to an understanding professional, a good friend, a counsellor or anonymously, to someone at a helpline (see ‘Useful organisations’).
• Take a break − You will be better able to face the challenge of caring if you take enough breaks away from the person and find time for yourself. Try to find time to reflect and relax, to pursue interests and hobbies, and to socialise with friends and family.
• Separate the past from the present − Try to find some way to separate in your mind your past relationship with the person from the current situation. Some carers say they feel as if they are relating to a different person, and that this helps them not to dwell too much on the past.

Citations:

  Factsheet 516

For details of Alzheimer’s Society services in your area, visitalzheimers.org.uk/localinfo
For information about a wide range of dementia-related topics, visitalzheimers.org.uk/factsheets
Last updated: June 2010
Last reviewed: June 2010
Reviewed by: Cathy Baldwin, Programme Delivery Manager, Knowledge and Learning, Alzheimer’s Society

IN the Beginning there was Senility - Where/When Did Lewy Body Diagnose?

Some people tell me I think too much.  That's quite surprising to another set who believe I think very little.  But, whatever the truth is, I do tend to ask questions just for understanding.  One question that arose was:
"When was the first dementia diagnosis and how did it lead to where Science is today?"

Going through the maze of articles and finding very little, at first, I was discovering that not many of the sites dedicated to the types of dementia had much to tell me as to the actual history of the affliction.  This was disheartening, but it made it a challenge.  So, despite the clinical findings, I was able to locate some information in some pretty interesting places.

It was in 1906 that Alois Alzheimer began to study a patient who exhibited severe memory loss and profound paranoia about his family.  Upon autopsy, he noted severe shrinkage of the brain along with abnormal deposits.  This was the first recognition of the condition known now as Alzheimer's Dementia. (http://www.alz.org/research/science/major_milestones_in_alzheimers.asp)

In 1910, the condition was formally named after the doctor who documented it four years earlier.

In 1931, the electron microscope was invented and introduced as a method for scientists to begin studying brain cells in more detail.

In 1968, there were the first validated scales of cognitive measurement introduced to assess the older adults who were deemed impaired due to the lesions or abnormal brain functions due to such deposits.

1974 - Congress establishes the National Institutes on Aging (the NIA).

Thus began the life of the Alzheimer's Association and the research into dementia.

In 1912, Dr, Fritz Heinrich Lewy discovered the neuronal abnormal deposits of protein that would be later named for him.  These would not be recognized in the cortical context until the mid 1980's  when it was seen as a form of Alzheimer's disease ("Lewy Body variant of Alzheimer's disease").    Finally, in 1999-200it was termed "diffuse Lewy Body Dementia".

In 1995 and 2005, there was a consortium to determine the clinical guidelines for diagnosis.  As of this writing, there is discussion of another in order to further develop and guide the neurologists in making the determining diagnosis  (MedMerits: Dementia with Lewy Bodies).  

Resources

Major Milestones in Alzheimer's and Brain Research 

MedMerits: Dementia with Lewy Bodies

National Institute on Aging

A "Very Busy" Week! or The Week Ending 05/03/2015

A Full Moon!  That's what I muttered when I walked out the door early this morning.
But nothing seems to be luny with the Mumster....



On Wednesday, Jean went, with pen and paper for notes, to see the Mater.   She wanted to take notes for Mom's friends as she realizes Mom simply doesn't have the mental energy to write them herself, even with Jean as scribe.

She found Mahma sleeping, although this was denied.  She was quite happy to see her visitor and asked if she'd brought her car (Jean could see her wheels turning).  Although Mom feels well taken care of at St. A's, she believes she's ready to begin packing to go back home;  she stated that she would be speaking with me about such a venture when she next saw me.

They spoke of common relative names while gazing at the photos on Mom's dresser mirror.  At one point, Mom stated that they had a relative in common - Mom's cousin, Janet.  Jean wasn't going to argue that point but carried on.

Before they headed outside to the garden for a stroll Mom decided to put on Jean's sweater (taken off upon arrival). It was a bit small, and Jean wanted it for herself, so Mom took it off and made sure Jean knew it was hers and not Jean's.  Then, Mom put on a jacket and off they went to admire the flowers and plants.

It was a good time, wherein they admired various plants and discussed them.   As they meandered, Mom complimented Jean's pants and Jean stated they were once Mom's.  Mom didn't believe her, so Jean told her to read the label marked, "Norma" on the inside of the band.  Mom did so, and Jean asked her what people would think if they saw this.  They both had a very good laugh about this.

She did not recall last Sunday's stroll around the block and was having troubles recalling when they lived near one another.

They finally went back in when Mom complained of the pain in the small of her back.  As they sat she stated that her toe nail was coming off, and this was reported to the aide.

Jean left shortly after (nearly 2.5 hours), and headed home.

This evening Mom and I had dinner with my brother and his wife at their home.  He picked her up and then took her for a scenic drive.  She does like these, so it seems.

We sat outside by the pool and chatted.  Mom was partly in the conversations - if only to reprimand us for slights that never occurred - and I discovered she would swing the conversations her way, and she spoke of many things that were vague and held no true meaning.
"Maybe next time you'd like to go for a swim."
"That could be, but when you think of how people are in trouble financially I'm not sure if they could see those flowers are so pretty there."
Yes.  Did you follow?  I'm getting the hang of it, and so are my brother and his wife.

Interestingly, though, she was drinking lemonade and when my brother came out with glasses of wine for himself and me, Mom wanted to know if that was the same kind of wine she was drinking.  I told her it was, and she was quite content.  So, when she said she wanted more I happily obliged.  I have mentioned that she cannot taste or smell anymore, haven't I in posts past?

Mom engaged in conversation at dinner.  She does look aged and tired - more so than I've seen before.

We walked through the vegetable garden and looked at plants and flowers.  Having her move seems to help her mood.

Mom wanted to leave about 30 minutes after she had arrived, but we kept telling her we'd need dinner, first.  She didn't want to eat and leave our father in the lurch.  I told her he was doing things with friends and wanted to make sure we'd be fine eating without him.  This reassured her.

It was a pleasant evening, and after the roasted beef dinner followed by homemade short cake with strawberries we were all quite content.

We were able to get her out the door (we are learning how to manipulate the situation, otherwise she won't leave) and we had a pleasant conversation on the way to St. A's.

Upon arrival,  we walked rather quickly compared to past times, and she sat in her chair when we came to her room.  I checked her oranges and soda - hardly touched in 4 weeks.   Her candy, unopened last week, was open with only a couple of chocolate bars missing.  What all this means, I'm not sure.

Mom told me how busy she had been this week, going from meetings and doing things with friends.  Of course, none of it happened.  But I have come to the realization that her reality is still enmeshed with her past and all she'd done in her busy days of yore.  No harm, in fact it gives her satisfaction.  A good thing.