“How do you deal with knowing what’s going on
… confusion, stress, anxiety, emotion(s) … ?
How do you handle all that?”
THANKS for asking our opinion as Persons Living with Dementia symptoms; Not knowing where you or your loved one are, on this dementia journey, makes it a bit more difficult to give specific suggestions.
Yes, you are quite correct;
Those of us who are aware of our decline have unique challenges.
Along with several of my friends, i think the most crucial strategies are:
Accept, and Grieve each step in Loss of Abilities and Behaviors that we associate with our uniqueness, along with the loss of aspects of relationships associated with those abilities and behaviors. This is a constantly-changing process, requiring repeated process of grief with each step.
In my observation, if we try to deny or “skip” those steps of grief, it usually results in extra frustration, resentment, and bitterness.
Something i wrote on this topic is here >> https://truthfulkindness.com/2015/08/18/loss-grief-choices-dementia-advocacy/ .
We go thru the grief process in order to FOCUS on our remaining Abilities (instead of the growing list of Dys-Abilities). Here is a vid Chris Roberts made for this topic >>
We join peer groups that help accept our losses, and strategize work-arounds for those dys-abilities. Some of those peer groups are via text (FaceBook, Twitter, etc), and some are via Zoom video chat where we visit in our Living Rooms, etc. (see Links at the bottom of this page). When i am in video chat i FEEL normal, because these folks actually do understand my challenges – they experience them also. i am not alone.
Here is a vid from Robert Bowles out our peer group of Dementia Mentors at >>
i think another crucial strategy is to find purpose AFTER diagnosis. Each human needs purpose, and for some folks that purpose has now been de-railed by our dys-Abilities … so in those cases we need to find NEW purpose. For many folks, that new purpose is related to Dementia advocacy in some way.
My friend Robert Bowles has written about this here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/robert-bowles-jr/asap/ ,
You might want to check out “Dementia Success Stories” (online booklet) at >> 616 Stories 1d Complete 20150326dw BatesPgs .
We at Dementia Mentors have put together 125 short videos to assist Persons Living with Dementia (and also care-Partners). i picked out a few of these videos you might want to check out, then invite your Loved One to watch a couple.
Here is a vid i did on continuing time in exercise at >>
… and here is a vid retired doctor Jennifer Bute did on a “LifeBook” project at >>
Personally i searched for quite a while to find Blogs written in first-person (by the person living with dementia symptoms).
For a long time i kept a listing but i am now losing those abilities.
In 2018 i shared these as my top selections >> https://truthfulkindness.com/links/plwd-blog-2018-rec/ .
For Peer groups:
i live in a rural area, so most of my associates are on FaceBook.
My favorite “mixed” text groups (for Persons Living with Dementia and also care-Partners) are
Harry Urban’s Forget-Me-Not groups (with separate groups for several types of dementia) and
Myrna’s “Dementia Middle Stages” group, along with loads and loads of other groups.
There are not a lot of texting groups for only Persons Living with Dementia symptoms, but some of the groups that i am part of (again on FaceBook) are
“Virtual Memory Cafe” (for Dementia Mentors members),
Sandra’s group “Living Healthy with Early Onset Dementia”, and
Kerry’s group “Just for People with Early Onset”.
Organizations for those of us living with dementia symptoms include
Dementia Mentors https://www.dementiamentors.org/ ,
Many projects with Dementia Action Alliance https://daanow.org/ , and also
Dementia Alliance International https://www.dementiaallianceinternational.org/ (which is both by and only for Persons with a diagnosis of full dementia — Mild Cognitive Impairment is not included in membership).
my most crucial entries at https://truthfulkindness.com/category/important/crucial/ .
Dementia Mentors at https://www.dementiamentors.org/ .
Dementia Action Alliance at https://daanow.org/ .
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