This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.  This entry is on Vocabulary: several friends Lament that they are no longer “Living well” with their dementia.  

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I think each person is different. We each define “Living Well” for ourselves.  Each one of us living with “the” condition (whatever that dys-abling condition is) should be able to define the term for themselves.

Discussing semantics can be so very complicated because meanings of words have so many differences due to culture, location, etc. Especially, i think our perception can be colored by who we spend time with; if those persons are Persons Living with Dementia – but in EARLIER stages, then i think our self-image is more colored by our decline.

Because i am having such difficulty finding any strategies that still work for myself,
when a friend despairs “I am no longer living ‘well’ with my dementia”,
i understand exactly what they are feeling.

They feel like failures even in the environment of their dementia friends.
They may have more than mild word-finding problems; they might have difficulty finding even one of the words to START expressing their feelings (like me).  They may have not understand much of what is said by their friends with dementia (like me).  Their ability with iADLs may have mostly disappeared, and ADLs (Activities of Daily Living) may be strongly changing.  They might be beginning dressing problems and toilet issues (like me) — or even more visible problems.  They may have a problem controlling saliva on their face, or have incontinence issues that are embarrassing, etc.   In my eyes, they have very high value regardless of whether they can still manage any of our standard “strategies”; regardless of remaining abilities. It is sad when even dealing with our symptoms becomes a value judgement of how we use strategies and what our current body-control is like. 

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Being asked this question was disconcerting for me;

“”Is that person actually living WELL with dementia??””

One of the first times I heard the phrase “Living Well with Dementia” it was a judgement of whether someone ELSE was “Living Well”.
The speaker was not dealing with dementia symptoms themselves and it was a form of judgement; a decision-making tool for whether they wanted to share the project from a Person Living with Dementia.
That is one of my misgivings about the phrase “Living WELL with dementia”.

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My friend, in my own perception
YOU continue to live “well” with dementia
because you are thankful for the moments;
you have not “given up” on being YOU (in whatever methods you still have the ability to live out those values) and living life.
In my perception you ARE Living Well with Dementia
… just with another – much more restricted “New Normal”.

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LINKS; Remember, Links are in colored text, NOT the pictures.

Some known Dementia stages and scales are at >> https://truthfulkindness.com/2021/06/02/dementia-stages-and-inconsistencies/ ;

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… and you might want to check out the Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/.

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Tags: alzheimers, dementia, living well, person with dementia, PLwD, strategy, symptoms, terms.  S&S categ: terms.

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