Mom's 99th Birthday: A Showcase for Mom's Many Faces of LBD

Mom's moods change frequently.  Often she's completely different in her behaviour and abilities within one visit. Sometimes it's not even the length of time spent (longer or shorter time frames) when we're "introduced" to the Many Faces of LBD.

She turned 99. A major birthday. We often used to tease one another about advancing birthdays saying some we wanted to reverse (when the second number was smaller than the first, like turning 42 into 24), the ones you didn't want to reverse because they made you older, like being 45 and a reversal would be 54. And, then there were the "irreversible" doubles of a number like 44, 55 and now for Mom, 99.

Mom's mood swings can be many and can occur all within one visit. In what we now know were the much earlier stages of LBD, Mom would show one of these "faces" and we attributed her behaviours to not getting enough sleep, having an infection or other physical challenge or simply just believing like everyone else she had her "good" days and her "not so good" days. After all, everyone said, she is getting "very elderly".

We were not seeing advancing Lewy Body Dementia because we'd never heard about LBD and Mom's actions certainly were not "typical" AZ and therefore not Alzheimer's, the only form of Dementia anyone seems to acknowledge or recognizes.

Then, too, we had the appearance of Julia Hed....into our lives and what we experienced as financial abuse, emotional abuse and undue influence taking advantage of Mom's condition, her loss of Executive abilities, that function of the brain to make decisions, to rationalize, to consider, to compare. contrast and arrive at decisions based on analytical processes.

Julia isn't and wasn't the only person who cannot see the forest for the trees as an old saying goes. As I continue to advocate for Lewy Body Dementia awareness, I rarely find anyone who's heard about LBD and most people have no idea there are many forms of Dementia.

We even had a Department of Health and Senior Services Adult Protective Worker, a young man, with a Masters in Geriatrics, tell us if Mom didn't have Alzheimer's, she didn't really have Dementia.

Ignorance. It drives our society into problems and situations costing the loss of individual freedom, family relationships and significant unnecessary financial increases and expenditures. Ignorance that's taught at even the higher levels of our educational systems, apparently.

Mom's face including her eyes, mouth and even her posture and body language are involved in these Faces of LBD.  It's like watching a character actor or being in an acting class watching someone who's told to portray various feelings using words and body language. Only there's often no ability to immediately stop the action as is typical in a class or with someone who has the ability to work through feelings and emotions by talking them through.

Like so many other human actions and emotions, it's not always easy to see what a person might do or say as sometimes the same postures, facial expressions or even language might trigger one response OR another. It's difficult to anticipate when a delusion is going to come forward into a sometimes otherwise common, everyday conversation.

Sometimes, out of nowhere Mom says something like she did the other day, "Did you know I'm getting married again? Do you know to who? To XXXX's Boss. He called the other day." Then she goes into a short story that's somewhat disconnected, somewhat blurred in content but still has elements of a storyline.

I did notice XXXX's "Boss" (XXXX being my son) has been mentioned before in Mom's delusional conversations. He's been someone who's commented on how valuable XXXX is to the company. Of course, that was and is because my son is "saving the world" -- but that's another story involving how he travels so much because he's working for our government, etc. Far from reality but somehow a part of Mom's repertoire of storylines. She has many. They seem to develop and change as frequently as Julia Hed.....visits. Connectivity?

The ability to rationalize, reason and analyze can appear at times but it's no longer accessible through suggesting these methods be employed or through the individual being told to use these skills and methods. The times of these "skillsets" being used and applied seem to have completely disappeared.

Here's a brief synopsis of observations on her birthday when my daughter, one son and I spent time with Mom at her facility and took her out to dinner in a restaurant we thought she'd enjoy:

JOY:  In times past, seeing, hearing or the mention of a person's name elicited a smile and body language of welcoming and happiness. This time, verbally telling Mom her grandson had come to visit, making a stop on his way flying to another city on business, clearly did not register the first or second time I told her. His coming close, bending down and talking to her also took several minutes before she realized what we were saying and who was visiting. Then she was "lit up like a Christmas tree" and of course, wanted to immediately see her great grandchildren asking where they were in the room. They, of course, could not come.

EMOTIONAL VARIATIONS AND SENSE OF CONTROL AND SITUATION:  Mom laughed and cried that day as she has on others often moving from one emotion to the next simply with another thought coming forward and then another. When she goes into these Mood Swings, it's very difficult to redirect her. Sometimes I've learned it's best to say I have to leave, take my things, go out the door of the room, wait about five minutes, reenter as though I'm just arriving and this can break the downward spiral she's entered.

DEXTERITY IN COMMON MOTIONS NOT FREQUENTLY USED:  Loss of motion and ability to sequence have been evident for some time.  I've written about Mom's inability to move her legs and her brain sending messages her body does not respond to.

Watching her handle a wrapped birthday gift, something she'd done for many years (wrapping and unwrapping) I saw her brain struggling to function with deciding what to do, how to do it and what to do next.

She looked at the package and admired it verbally but didn't understand it was to be opened. When asked to open it, she didn't know how and did the common LBD response of "I don't know where to start" and laughing. LBD, in my experience, is full of deceptions, practiced and perhaps simply another part of the survival instinct part of the brain coming forward.

Placing her hand on the package did not stimulate the thought process for the procedure. Helping her by tearing off a piece (demonstrating the desired action) resulted in her being happy to see the package being opened but not the response even some children make when this demonstration is given of grabbing and tearing apart the package themselves.

Placing her hand in mine and helping her tear also didn't work. I finally gently took her hand in mind, we grabbed a small area and tore a long piece and repeated this procedure two or three times. Then I replaced her hand on the package and she felt for a piece and slowly peeled it away.

Interesting. A birthday package. Usually a delight in finding out what's inside and can't wait to open it now becomes a visual and physical challenge; something unfamiliar as a daily routine but something known to have been done before but that putting the information together and accessing the correct action/response is now becoming more challenging.

VISUAL STIMULATION.  We chose a restaurant that wasn't too dark or too bright and where we knew the background music and level of "patronage" noise would not be high. We avoided choosing a restaurant with a bar directly within the restaurant area. We went early; Mom's used to eating around 5 PM and we felt arriving close to 4:30 would allow us some time to get settled, make choices and be almost finished before more guests arrived. Thankfully, her actual birthday wasn't on a weekend this year so that also helped.

CHOICES: We've found using two choices at most works best with food and clothing. This time we decided to do a "family meal" which provided two entrees. We wanted Mom to be involved as much as possible so we asked her if she would like "A" entrée or "B" entrée -- when actually both would be provided. In this way, she had a choice and we had less challenges; we also were seeking to cut costs as this past almost three years since my husband's death and the almost total rupture and tearing apart of our lives financially (especially with the complications of Julia Hed......'s accusing me of financial and emotional abuse, tearing Mom from our home and causing my bank accounts to be closed; see writings on JH and Abused Family.

SELF FEEDING:  Mom can still feed herself most of the time. She often reverts now to treating everything she eats as "finger food" but at least she's still capable of remembering this activity. This night, though, perhaps because she wasn't in the facility and her brain "recognized" being in a restaurant, I notice Mom is using her soup spoon to eat (we cut everything up and provide small portions on her plate so she can push it around with a piece of bread and into her spoon) and she's doing fairly well. Of course we've asked for another cloth napkin and put it on her front and one on her lap because with her shaking of her hand she uses to feed herself, food inevitably lands on her front or in her lap. I see my Mom somewhat as she used to be in social situations. She's not carrying on a conversation, her dining skills are greatly affected by her physical limitations BUT she's seeming to take in a little about her surroundings and even makes a comment about being glad to be back and how she's enjoyed dining there in the past.

RANGE OF MOTION.  We work through the challenges of moving Mom from her wheelchair to the car and from the car to the wheelchair. For some reason, getting out is easier usually than getting in. Guess it's because she's coming forward into something she recognizes and is familiar with while getting into a car is a skill set she uses less frequently.

I discovered a way we can usually get her into the car and sometimes it even works when we or the facility has difficulty moving her from her wheelchair to the toilet or from her wheelchair to her lift chair. I can't remember how the idea came about but I asked Mom to put her one hand on my shoulder and the other around my waist and "DANCE" with me.

For Mom's generation and for many of us, dancing together as a couple is partly learned and partly instinctual. It's a learned skill involving various brain activity and apparently this functionality remains for Mom.

What's interesting is sometimes when her feet won't move (Mom says her shoes stick to the floor/ground but we know it's the brain/body message sending/receiving that's not functioning) using this directive of "Let's Dance, Mom" and putting her hand on my shoulder and the other around my waist keys her brain/body to move and allows us to position Mom so we can turn her body around and sit her down in the front seat of the car or on the toilet or in her lift chair.

LAUGHTER AND TEARS.  During our visit Mom laughs a lot. Many times she's "grinning" but her eyes seem to be not exactly where we are; perhaps she's fantasizing about the moment in ways we cannot see through our eyes.

Her mind wanders so much; changes onto so many subjects; it's when she thinks of something sad or that concerns her we find she can begin to become emotional and sometimes the escalation is into sobs and lots of tears. But this can often end almost as abruptly as it begins. Again, it's like being with a small child. What we used to refer to as "tantrums" in children, "unreasonable actions" and more appear more frequently. Interesting how we look at these in children's behaviours as "choices" -- wonder if they really are????

Some of the tears are most probably because my son will be leaving and his visit is so short and they're, not of his choosing but because of the distance, so infrequent and she misses him. Mom lived with us all the years of all of our children's young lives and through their college years and beyond. She's been a close part of their lives for more than a third of her own life. Of course she's moved to cry when her mind thinks of his leaving. What's more difficult is that like a small child she can be somewhat inconsolable because she, too, doesn't have that concept of time -- there will be another time when the can be together, a time to talk on the phone, etc.

However, my son does not really understand Mom also realizes her "time" is becoming shorter and shorter and therefore her feelings of "losing him" and us is a valid feeling and one that is difficult to work through because she does not have the "Executive function" of her brain, she does not have the ability to reason on our level.

How much we can learn from Early Childhood research if we would just realize the similarities in working with children at various ages and stages and with the elderly as they move through the various phases of Dementia, Lewy Body and others.

CELEBRATE LIFE with the ones you love.  Make Memories To Last A Lifetime.

Even when the one you love cannot retain the times spent together, the ways in which you provide and care about them; even when they tell you or others "no one cares about me", take strength in knowing you are providing Love, Care, Compassion, Concern and above all else, you are serving as their Advocate and ensuring their quality of life is far better than if you walked away, infrequently called, occasionally visited and simply "moved on" believing your loved one didn't even know you were there or because they told you to "go away" or "you're not my daughter/son/ etc".

I've been there. It's frequent territory with Mom's ever advancing Lewy Body Dementia. Many days are not easy. Some days seem impossible. I just have to keep telling myself those days pass as the others do and in the end I have all those days I've been able to share, time I've been able to spend with Mom and I will cope and survive and thrive.

I will share with others my journey and I will find a way to enable others who will walk this same road to understand LBD through this blog and other advocacy.