Tru here.

To Care-Partners … and “Care-Givers” 
(which to ME means that they feel the relationship is all “giving” on their side of the relationship — and no “getting”;
their loved one has lost all choices, 
with no ability to become a “partner” in their own personal care).

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This poster was shared in a “mixed” group (of folks with and without dementia): 
“Caregivers go through more than they will ever tell you. 
They give up a lot and rarely have a social life. 
They can get sick and emotionally worn out. 
It’s a lot for one person and you will never know until you have walked the road of a caregiver.” 
— Lessons Taught by LIFE .

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This poster is true — those sacrifices have been a part of life in communities all over the world since ancient times.
We had my great-grandmother living with us when i was about 8 years old.
When you look at census results for 1800s, you see that caring for ill or aging loved ones was still an expected part of adulthood in the 1800s.

it is only in the past century or so that the “circle of life” was hidden by care facilities.

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Before the Person WITHOUT Dementia challenges
gets too wrapped in their “burden” perspective,
it would be nice if they consider the perspective of the Person Living with Dementia symptoms.

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Most of us lost social life long ago,
and we have been emotionally exhausted since before we needed a care-partner. 

Extra energy is spent on all sorts of things
(that we WISH you would begin to research and realize,
so that maybe we could get more on “the same page” for a possible PARTNERSHIP in care).
(see Links below)

 

Much of living with dementia symptoms is the depletion of CHOICE.
Choice is a privilege that is disappearing for us in so many ways, along with context.
Soooo …

Loss, whether temporary or permanent, must be acknowledged and grieved
in order to again gain perspective and move on. 

It is important for care-partners to acknowledge loss: 
— Permanent losses in aspects of their relationship with their loved one …
and also TEMPORARY loss in aspects of their own personal life.
Those losses must be acknowledged and grieved.  

It is also crucial for the Person Living with Dementia to acknowledge THEIR losses … and grieve aspects of life and relationship that will never return
– especially the loss of choice in different areas of life. (see Links below).

Unfortunately none of these losses are temporary — they are all permanent and create growing frustration and sometimes panic,
with the feeling of running out of time.  

As Persons Living with Dementia,
one of our biggest challenges is to accept and grieve those losses,
but to keep perspective by
FOCUS on the choices, abilities, and levels of relationship with every living thing that we still have …
while we still have them
(because we live with the knowledge that every one of these relationships will also be incrementally removed). 

If we cannot accept and grieve these incremental losses,
then it will almost inevitably result with major “behavior problems”, both in current time, and in the future.

The FOCUS on caregiver burden creates feeling that
those living with dementia should suicide while we still have the choice and ability,
… in order to avoid creating that burden for our loved ones.

is that what you really WANT ?? 

If not, then recognize (acknowledge) the losses, and grieve them … 
but then move on to FOCUS on what is possible
instead of what is lost.

That is what those of us with dementia symptoms must do.

— *** — 

Many folks feel there are definite benefits to having those experiencing dementia symptoms within the group,
providing the unique first-person perspective which those who have experienced these symptoms can share. 
So … Suggest the listing of caregiver sacrifices be addressed to groups of caregivers-only.

Husband supplied this closure: 
“Relationships in the circle of dementia-care and support need to change or evolve as time goes on. 
As my wife said (above) each partner in this circle needs to acknowledge and incorporate change in that relationship.  Failure to acknowledge and appropriately address these changes leaves that circle with a flat spot or bump, depending on the circumstances.  In the daily progression of life, each time that spot is reached there is a definite problem in the relationship. 
Therefore i repeat “It is very important for all members of the circle to make their adjustments gradually and with purpose”. — Guy Burnett

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LINKS:

Time and ENERGY consumption at >> https://truthfulkindness.com/2015/07/20/time-energy-consumption-dementia-symptoms/ ;

Path THRU Loss and Grief at >> https://truthfulkindness.com/2015/08/18/loss-grief-choices-dementia-advocacy/ ;

Top Tip >> https://truthfulkindness.com/2017/04/21/pwd-grieve2accept-dx-purpose/ ; 

AfterEffects of CareGiving (book) at >> https://www.amazon.com/Aftereffects-Caregiving-Gary-Joseph-Leblanc/dp/1478759828/ ;

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. * Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  If you have a WordPress account, Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 25Oct2020. Tags: alzheimers, burden, care, caregiver, carepartner, dementia, grief, loss, partner, PLwD, relationship, .

 

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