Striking Dissonant Chords: Lewy Body Dementia and Aphasia

From an entry started September 7, 2013 when Mom was still very much with us. 
There's a mix of present and past tense; I've not attempted to "correct" this writing and hope it doesn't cause too much reading confusion. I wanted the reader to have the sense of our going through the process as it happened and yet to realize it was a continual and advancing process.

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 but 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 interesting at least and frustrating a great deal of the time.

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

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. 

These words are 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've always known my Mom was quite intelligent. She only attended school through the 8th grade; lived in a rural area and being born early in the 20th century, she was needed at home to help with three younger siblings. In her late forties she went to beauty school, studied chemistry and physiology and excelled above young girls in their late teens. 

Mom was so proud I was going to college. She challenged herself in her mid 50's working as a beautician long and hard hours finding time to attend GED classes and getting her High School Diploma through this program.

I still remember when she told me; she'd kept it a secret for a long time; I was away at college so she could easily keep this great news from me until almost the very end.

Neither of us were very good at keeping secrets from one another when it came to gift giving. I remember the time I saved my baby sitting money for a year and went each week to a local store to pay for an inexpensive but nice watch; Mom's had broken, one she'd had from before she married my Dad. 

I kept the secret for months but a week before Mother's Day, the day I planned to give it to her, I'd finally earned the last $5 and was overjoyed I'd be able to get it on time for the special day. 

I was smiling from ear to ear. It was Mom's day off from work and I asked her if I could take some time away from helping around the house to go to the library. I planned to go there, too, one of my favorite places, the store where I was paying against the watch for almost a year was just a short walk farther around the corner and down the street.

Mom said, sure and she needed me back within a short amount of time because she wanted to wash windows and she knew how it bothered me if I didn't hold onto her legs while she balanced on the windowsill of the second story old apartment building we lived in.

I told her it would only take a few minutes for me to run and pick up the .... yes, I said it, "watch". I don't know what or why I said that word, guess I was just so happy, so proud to have such an amazing gift for Mom. 

We had so little. Not even a car; Mom had to ride the bus to work every day. But we had one another and we had peace of mind. 

Unfortunately my father was an alcoholic and living with him was more than Mom could continue to take and more than a child should have to endure.

Mom loved to read: history, biographies, archaeology and other subjects including mysteries were always on her bedside table. 

She loved having our children, her grandchildren, read to her from their first books through many advanced texts. She learned along with them and because their studies were far more advanced than those she'd taken so long ago, she gained an even higher level of education. 

Being a multigenerational family and Mom living with us since our firstborn was two months old, she had the pleasure and so did they, of reading together every night.

Mom's mind was always active. Travelling was a great gift for her and she loved to share what she'd seen and learned.

It was sad when she turned to cutting up her pictures in the last few weeks she lived with us and wouldn't talk about her travels for a long time after going into the facility. 

Somewhere inside of her she must have realized what was happening but had no control over the direction or progression. 

I know it wasn't her choice to enter a facility; Julia had convinced her it was her only choice, though. Julia was the "church" member who turned our lives upside down with false accusations and using undue influence.

To this day, I don't understand anyone who had as much ability and knowledge of what we were going through as a family, what we'd been through, could be so destructive of another person's life.

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 and cause 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. It was too small and the coordination needed to hold it and trying to locate the button to "connect" and "disconnect" was gone.

Time passed and even if she was in the room and the room phone was allowed to ring many times, she didn't answer. At the time we always thought she wasn't in her room or perhaps was too far away, in the bathroom, for example.

Now, watching and listening, hearing and more fully noticing various progressions or more accurately more lessening of skillsets, I believe she was progressing through 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 will not be in effect.

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. But, 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.

We've all "drifted off" from time to time on a thought or concern but this isn't like that. 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. 

For example, she usually remembers she's supposed to lock her wheelchair before attempting to transfer to her chair (she does this herself even though she usually has 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.

Back To The Future when this is being added to:  December, 2014

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

I believe in the same amount of time passing in the future, we'll see today as also "before" and with less knowledge and understanding.

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, Mom would say. Life is full of surprises and sometimes the best surprises are in finding others who share your journey.