Brain Changes

Mom's LBD reminded me of an experimental music presentation I once heard that included many dissonant chords my ear and brain had difficulty accepting.

There's an underlying relationship of notes; the arrangement, the sequence and even the sounds themselves can be sequential and logical or varied and confusing. 

Having Aphasia also makes carrying on a conversation with Mom both interesting and frustrating. Mom inserts sounds and gives them various meanings. 

For example:  "Haska" is one of her favorite words. 

Just when we think we understand what she's using it to describe (a specific place she's going to; a hallucinatory place she's developed in her life) she may use it in another way.

Ha Ha (not a laugh, a type of "membership" in a Haska)

Wa Wa (membership in another group, not a Haska and apparently quite contrary to the Ha Ha group). 

Fascinating when you realize there are "values" associated to words that seem random or not "actual".

They have meaning to the speaker and theres's still a level of ability to set personal values even with adjusted words.

She may use the same sound combinations in a sentence where they have another meaning and we're left guessing what new identity they've taken on. 

There was never a "dull moment". I smile and even laugh today; back then it was confusing and even upsetting to listen and watch; we did not understand this was her brain trying to express, sort and communicate.

Now, I realize it was a sign of the Dementia.

Words were inserted into sentences as though they belong in a specific place and have a specific meaning. It's not random; it's as though the brain is simply substituting.

I often read about other LBD people who've been highly productive, intelligent and involved in life and wonder if having an active and capable brain helps to keep Lewy Body Dementia at bay for so long causing the long roller coaster ride until it finally totally engulfs and destroys albeit often in the very last breaths of life.

For a long period of time Mom could speak on the phone in her room. The mobile phone we had for her became unusable.

Those who live long distances from someone with Dementia, who do not have personal interaction, often blame those who caregive of many negative actions.

The phone was small. The coordination needed to hold it, trying to locate the button to "connect" or "disconnect" was gone.

My oldest son claimed we "took away" his Grandmother's phone and wouldn't let him talk with her. Far from the truth.

Time passed and even if she was in the room and the room phone was allowed to ring many times, she didn't answer. 

When daughter or I called, we thought she wasn't in her room or perhaps was too far away, in the bathroom, for example.

When you love someone, you sometimes look past what's in plain sight including mental, emotional and physical changes.

Watching and listening, hearing and more fully noticing various progressions or lessening of skillsets, I believe she was progressing in deterioration or loss of various processing skills.

She'd often pick up the phone and didn't know which end to speak into and which end for her ear. 

Mom was still good at "covering up" and had the ability to laugh at herself; she sometimes realized the phone was wrong side up for listening/speaking. Then it progressed to where she did not have this recognition.

Mom never ceased to amaze me, though. I'd spend time with her, notice what I felt were changes, think they're now a fixed behavior and then on another visit, not necessarily the next, that change would not be evident.

This was one of the "masks" I've talked about with Lewy Body Dementia; off and on, sometimes fixed and sometimes loose -- never knowing who was really there, behind the mask.

Mom seemed to stare a lot more than she used to. 

Yes, she had sight challenges and the hallucinations made that condition even more challenging. 

Or, could medications Mom was receiving produce these "side effects" and we didn't realize?

She fixed her gaze more often and seemed to be staring off into space without appearing to be thinking or focusing on anything, trance like. Again -- Dementia or medications?

We've all "drifted off" from time to time on a thought or concern This is how Lewy Body Dementia can affect in later stages and so we assigned this to LBD when maybe we were wrong.

To our knowledge, she wasn't on any "drugs" that would cause this behavior and I've noticed this in other people with advanced Dementia. 

Mom remembers certain actions need to be taken but while in the process of doing the action may reverse her actions and undo what she's done. 

She usually remembered she's supposed to lock her wheelchair before attempting to transfer to her chair (she does this herself even though she should have assistance with the transfer).  

She'll lock the brakes, move her hands and then believe she's not locked them and unlocks them. I'm sure others afflicted with LBD have similar reactions and that's why LBD can be so dangerous and so many falls.

Hindsight is always so much clearer. Advancements in the short time since I started writing this Blog, in the field of Neurology & Lewy Body Dementia, have moved light years ahead. 

Today . . .  
I'm really happy I somehow gathered the courage to "go public" with our challenges and share the problems and the possibilities we uncovered along the way.

I look even farther forward to the additional ways I can add to more individual walks along the paths we maneuvered so precariously.

Yes, Mom loved to read and she was a life long learner. I know she would be pleased to see what we've accomplished and how we're working to resolve problems that still exist and challenges we still witness and encounter.

Life is a process, it's full of surprises, Mom would say. 

The best surprise: finding others who share your journey.

Originally Published December 29, 2014. 

Mom's "100thyear". She passed the prior January.    

                                                                                                                                      Originally started September 7, 2013. 

Mom was still very much with us.