Personality Change With LBD

Lewy Body Dementia is a very clever disease.

It seems to "wait in the wings", on "the sidelines", giving direction and coaching in the beginning.

As the disease progresses, it begins to become the lead player, replacing the person with its own persona.

Taking over. Becoming someone "different" to the world. 
Being seen in its full regalia, finally, by those who care give, those who care about, and those who have the responsibility they've taken on as "Care Giver".

A fellow traveler walking alongside and sometimes running to catch up with the changes, the differences, the needs of Lewy Body Dementia.

Life is Reality when you are fully involved; it's unreal when you choose to put yourself in another place and time.

You, there! 

Who sit in judgment, believe you "know what's best" . . .  

Hand out, reaching in other pockets, always "in need".

Turning your back when others could use your support.

Where are you? On the sidelines? Living far away? 

How often do you visit, make time to stay with a person with Dementia and provide a "break' to the caregiver to sleep, read, go somewhere to walk, exercise or have lunch with a friend.

Tearing apart, blaming, accusing, believing "they" are the cause and not a medical condition with no side path just a road of unknown length and challenges.

Questioning even criticizing telling the person trying night and day to cope, to manage, to ensure safety and well being . . . 

You DEMAND and you ASSERT from your safe and separated "living arrangements". You may even "make a trip" to visit shunning spending time finding ways to really help, maybe delivering a "special photo album" but never coming alongside or offering "respite" by ensuring a break for the real caregiver(s).

Separating yourself rather than coming alongside?

It's far easier to push and shove the "caregiver" around and  always finding fault than to actually participate and give support.

It's never right, never enough and always used to strike out when support and consideration, appreciation are needed.

For years you've turned your back or at least "let another or others" do all the "dirty work" involved in caregiving, walking away, only reaching out when you believed there was "something you could get", you punished anyone who would not give in to your "me centered" demands.

You tear apart the primary "caregiver". Refuse to recognize a person can have Dementia and has had it for some time.

You can't recognize real Elder Abuse -- it's far easier to blame a family member than an "outsider".

You demand and accuse -- so you can feel "excused".

Reality Checklist:

Those who care give for a family member with Dementia face daily mental and physical challenges, illnesses and afflictions.

They stand alone while standing beside and walking along their loved one's winding, steep, and ever changing paths.

Struggling through the present into the unknown of the future,

there is no specific direction and often no markers or guideposts that apply.

You who attack, you who blame and strike out verbally cannot accept there are life changes you cannot control. 

You hold everyone but yourself responsible and accountable to a standard beyond their ability to provide.

You refuse to accept change, believe you can erase the present while not seeing the future if you discredit the past.

You refuse to listen, to become involved or want to take over "from a distance" because your time is so valuable.

It's "their" challenge, "their" problem . . .  if any problems really do exist, you tell yourself.

You twist and turn reality without spending real time with the person who needs the care, without being supportive choosing to attack, criticize and blame.

You visit,  for a short time. You leave. You may be close by or hundreds of miles away from the day to day and the constant fluctuations of a disease you will not recognize or believe is there and another lives daily with the ever changing challenges.

You do not tend constantly to the person's physical and emotional needs and the few telephone conversations you have you write off any "challenges" to poor transmission, the person's "hearing", or any one of a number of possible excuses.

You see the past, not the present. 

You cannot cope with reality. 

You create what you need, what you can accept.

Love is blind, so they say. So is fear of loss.

All forms of Dementia including Lewy Body Dementia wear many masks, playing many parts as it moves through the brain and the body causing challenges and removing abilities.

As a society, We do not "connect the dots". We see TIA's, high blood pressure, falls and other "signs" as not being a part of the process of LBD and other Dementia. 

Wake up, get up, take action, advocate, above all realize 

Dementias, especially those less known like LBD, are a

thief in the night we allow to ravage & control when we do not recognize their abilities to tear people, families apart.

Family Life Multi Gen Style

 A Penny For Your Thoughts

Old saying, let's up the ante in the first part of the 21st century.

Come on, you can add your two cents worth.

Oops, another faux pas. What's your time worth these days.

Use that as a ruler and measure your current age by your anticipated "end date". 

It's for perspective. It's reality.

Lifestyles vary and continue to change shape through decades.

Living Together: accepted; a common practice. Think "Friends".

Cohabiting without marriage:  a commonality with "the event" being seen as a social rather than "sacred" joining together.

'Weddings" beyond personalized into the "zone" once reserved for specific socio-economic classes or celebrities.

Ceremonies everywhere your heart desires and usually aiming to "outdo" or "one up" to show "waiting was worth it".

Multi-gen families are seen by many as being a practice of low-income families or immigrants who can't afford to live otherwise.

"Roomies" can be male/female/similar ages but NEVER should they be an actual family unit of kids, parents, grandparents.

 

Not for everyone; multi-generational cohabitation requires giving, taking, sharing and caring.

Short-sighted, self-serving, lost opportunities and possibilities say some, more responsibilities shouldered, more "mouths" to feed and unnecessary challenges in "today's world".

 

Listening, learning, sharing, caring, giving, receiving,

understanding growth, development and most of all, aging.

We built an inclusive family with three generations under one roof for four decades.

No lifestyle has guarantees. Life is what you make it.

 

Moving from Chicago to Philadelphia to St Louis (two different locations).

We recognized value, understood inclusion, worked through differences and learned valuable lessons.

From one infant, adding two more along the way, several jobs, a few businesses.

 

What about privacy, intimacy, who makes decisions and who is “in charge”?

Few differences from "regular life"; you reap what you sow.

You learn consideration of others, recognizing and accepting differences.

 

Growth and development, learning to accept and understand change and decline.

Not a “built in babysitter” or someone to “break the tie” in a disagreement.

All ages and stages, all capabilities and capacities from birth until end of time.

It takes a village used to be a common saying. 

 

Understanding one another starts in the home where memories are made.

When we have direct ongoing contact, we learn first-hand.

More multi-gen families might be the answer to halting generational distancing.

We build bridges to connect, not ditches to separate.

Dancing With Lewy Body Dementia

You carry a torch when you give others a light in the darkness of seeing, knowing and advocating for those experiencing the challenges of Living With LBD.

There are resources today we did not have with my Mom and yet there are stories of living with Dementia, by individuals in 2024, still containing words of struggling families and spouses trying to understand this "thief" taking over their loved one. They don't know what's happening, why it's happening, where to look or haven't met someone, llke me, who Advocates, reaches out through personal contact & online. One resource that has grown, developed and provides a resource for support as we walk with those we love is the Lewy Body Dementia Association. It's become a resource for me and for others who try to understand and cope with any behavior we see but do not understand. The words help to shine light on what, why, how we walk along the road, the path, the journey we started. It's so different from the corner we turned somewhere along the way of marriage, a relationship, friendship, being a daughter or son or anyone who regularly connects with a person we love but do not understand what is happening. The following is copied from an email I received and I hope acceptable to the Lewy Body Dementia Association I've copied and pasted it here for you to read.   In our support group for those living with Lewy, we often engage in enriching discussions surrounding the rollercoaster of emotions that can come with LBD. Recently, we delved into the topic of frustration and agitation, recognizing the unique challenges they pose for everyone involved. In collaboration with those who have lived experience with the disease, we created five tips for those with LBD and their care partners to keep in mind while navigating these difficult feelings. 5 Tips for Managing Moments of Frustration Think about the ‘why’ behind moments of frustration. Are there potential physical, emotional, spiritual and/or psychological factors or perceptions that are influencing these reactions? Is there something you can do to proactively get ahead of a future issue?  Ask yourself if there are accommodations that can be helpful insupporting you or should space be given in certain moments?  Try to remain as calm as possible. This can allow everyone involved the opportunity to de-escalate, even those with cognitive changes and challenges. Show appreciation when things work, rather than only reacting when things are not as effective. It can also be important to clarify what is not helpful too - being honest can lead to improved solutions. It’s important for everyone to feel loved, safe, heard, and understood. Ask how your environment could increase or reduce your frustrations. Can changes be made to reduce future frustrations? My Personal Thoughts React less. Observe more. Walking into someone's life whether into a room or into their lives requires pausing, observing, listening and learning. Gymnasts, ice skaters, dancers focus on where they're going from where they are. Dementia is another "dance" in life. Where they were and now are, requires mentally moving from one place to another. Dementia focuses on wherever the mind has stopped, rested or jumped to. Waiting. Anticipating. Forgetting. Remembering.  All can happen slowly or within a split second. Multiple changes can occur inside the person, before you see or hear an action or a statement. Be grateful for the moment without reflecting on where you hoped you would be. It is time, spent together, being with, listening to and feeling fulfilled. Follow where you are led even if the destination can't be seen or heard existing in the mind and heart of your friend, relative, parent or grand-parent. They see what they see, feel what they feel and move from moment to moment into and out of places you barely recognize before they enter another. Do not miss the present moments wishing to return to past times.  Place value in where you and they are even if it seems to be different and unknown. Love needs no common ground when what is seen and felt is your presence. Value what there is and set aside expectations and usual practices. It's the journey not the destination.  Time shared to recall at a later date. It's a gift of self and that is the most valuable of all.

Another One Bites The Dust

We’ve all done it.                                                                                                               Greatest Gen, Boomers, Gen X, Millennials --and survived.

You’ll make it through struggles, joys, twists and turns, 

More to do than time and money.

Just stop wanting to “take”.

Realize you receive more from “giving”.

You want the cities, bring them back to life.

Work in those groups of friends you have.

Work together. 

Develop those “old skills” you worked so hard to get past.

Revival through recognition.

YOU built the places to call your homes for generations.

They never go out of style 

No matter how many creators there are.

Crafters are critical, the backbone of generations. 

Builders and remodelers, past and to come.

Most of all, yesterday you shine, today you tarnish.

Tomorrow you’re seen as broken.

You, too, will be “replaced”.  

Your time will have vanished, unwanted, disrespected.

To those you and your friends gave the greatest gift, life itself.

What "goes around, comes around".

Generations have taught us to be careful what we say and do.

"Do unto others as you would have others do unto you"

Setting aside the wisdom, 

believing there's always "a better way".

Following those who use us only as stepping stones 

to get what they want, must have, need to get past, 

places us next in line to receive what we have given.

The brain should be fed by the senses, not controlled by them

Societies values determine their lifetime as influencers.

People who follow and practice destructive philosophies are those who eventually reap what they have sown.

When we sit at a machine believing it will provide all our answers we forget we are still in control . . . for the moment.

The future is there, right in front of us.

We either clean up the present 

Or face the time when we "fit the mold" we've made.

Go visit, learn, join, research validate resources, share & care.

You are privileged to build your life, construct it well.

Forgive Manipulation & Control?

Forgiveness.

Is it turning away, offering the "other cheek",  saying you "forgive" even when the abuse continues?

Why have we become a society that "honors" forgiveness above all?

Why do we believe we MUST forgive to be "forgiven"?

Why do some religions believe one person acting on behalf of a higher "power" has been granted the exclusive right, the privilege to "forgive" and so one can go, confess and receive "forgiveness"?

What about the person who has been violated, harmed or their life or death affected by the actions of another?

Once upon a time there were gradients of "sin" and recognition that "sin" was, rather than today's philosophy that we can categorize certain actions and "dismiss" them if they are "moved to another realm" -- the realm of "mankind's" responsibility and therefore not within "the church's" responsibility?

I admit I don't understand and the older I become the less I do.

The only thing I seem to see is the person who is "forgiving" of another releases the power held by another in providing forgiveness. 

Or do they?

When the action, the words, the deeds continue, how can forgiveness accomplish a release for the peson who has been and continues to be "wronged" by another or others.

Why should a person or an entity be allowed to be "above" regular law and to condone through silence any and all transgressions from those who may appear to be "practioners" of theirs?

Have we become so willing to forgive and forget we've surrendered our lives to being manipulated and controlled?