G2AP: What do i consider the most crucial tip for Persons With Dementia?
(1) Grieve in steps, … to (2) Accept reality, & (3) find Purpose.
(1) GRIEVE incrementally, with each step in loss of abilities, behaviors, & expectations,
… in order to
(2) ACCEPT life as it IS and
(3) Find PURPOSE in current life.”
— Truthful L Kindness 2017-04/19
GRIEVE incrementally, with each step in loss of abilities, behaviors, and expectations,
“Saying goodbye to the things we once did, is so hard to do” — Harry Urban 2016-03/14
Sometimes we forget that (like most grief) living with dementia brings a type of grief that is a process; not an event. As each new symptom appears or intensifies, we need to go thru the grief process again.
Usually the first time a symptom shows up is when i am sick or extra tired … and it is shocking.
The first time i did not recognize husband in public.
First time i did not recognize room of my house.
First time i did not recognize husband at home.
First hallucinations, etc.
But then it happens again
… and then the frequency increases until it becomes my “new normal”.
This is my new pattern of loss: (a) Increasing frequency of loss. (b) Increasing intensity of loss. (c) Increasing experience of loss and grief, in order to bring … (d) Increasing appreciation for the blessings of life. This grief must be recognized and dealt with in healthy ways in order to get past it and CHOOSE to focus on the blessings of life.
Sometimes the first stage of this grief feels like fear or anger. It can trigger flight or fight adrenaline. Before tremors were so bad, when this happened i could turn it into a productive act and cut kindling. Now i can no longer handle spoon & fork well, let alone an axe or hatchet (LOL). But if i am doing well enough and service dog trainee is not super-energetic that day, then he and i can take off walking down the gravel road to the harbor. If pup is too full of energy and pulling me off my feet, then i will get on treadmill (which has extra-long support bars for balance). Then … after i have worked the adrenaline off … once in a while
… I cry.
Sometimes i not only cry but i DESPERATELY cry, desperately pray, hug my fuzzy dog for long periods of time and go out with my pet chickens competing to sit on my lap … crochet with extra-soft cuddly yarn, or draw. If these emotions hit late at night i will play my lap harp. If while i am in the car then i grab my stuffed animal off the dash and stroke it while the tears fall. It is okay to cry. In larger perspective I consider it renewing because …Once i acknowledge and consciously experience the grief then, as they occur, i can use these repetitive symptom events as reminders to find compensatory tools and strategies for self and others to live as well as possible with the time we have available. … until the next round of grief comes due … then must experience it also, in order to get past it.
… I choose to focus on life’s blessings (and the blessing in window of time for advocacy).
But in order to do that i must pass THRU and endure the grief.
Both are an important part of the complete process for keeping my life in a larger perspective.
When living with a dys-Ability
HOPE is crucially important for living each moment in a positive manner,
But … unless the person fully accepts a foundation of true REALITY
to build that hope upon,
their hope becomes a root for bitterness.
— Truthful Loving Kindness on January 29, 2017
Harry Urban: “When you lose the things you taken for granted all your life, the reality of your disease takes hold.” — 2015-09/21 …
Gord Settle: “Sometimes you just have to let go”. — photo also by Gord Settle on 2016-Jan-03
Further detail at: https://truthfulkindness.com/2017/01/30/denial-one-sided-truth/ .
and examples at: https://truthfulkindness.com/2016/05/08/first-time-of-where-am-i/
& https://truthfulkindness.com/2014/11/10/melancholy-day/ .
Fully ACCEPT reality
Must fully accept the negative aspects of the life we are now living before we will be able to accept and fully utilize the positive aspects of our current opportunities. Both are part of the picture, and they come as a package.
“Without acknowledging the negative aspects of reality,
and allowing ourselves to go thru the process of grief
— repeatedly, at each step of our growing dys-Abilities from dementia symptoms,
we cannot ACCEPT those dys-Abilities,
own them as ours,
and find whatever work-arounds might be possible
to live the best moments of each day.
Otherwise, ‘Living Well with dementia’
is usually just denial and pretending.”
— Tru 2017-01/29
Robert Bowles has a new meaning for ASAP. “A = Acceptance, S = Socialization, A = Attitude and P = Purpose. I have found these four things to be the foundation of my living with Lewy Body Dementia (LBD) well.” — Robert Bowles 2015-01/31
Harry Urban says: “Like most people I went through the stages of denial, anger and over a period of time, I finally found acceptance with my diagnosis. It was not an easy journey finding ways to live beyond what I thought was a death sentence and found many of my friends and especially relatives have abandoned me and left me to fight my disease alone.” — 2016-06/28. “The first hurdle to cross is the acceptance of your diagnosis. This doesn’t mean you like it or you are giving up
but rather you are open to the options and changes you will be facing.” — 2016-05/12.
“Only you can take that giant step toward acceptance of dementia, that is not saying you have to like it.
You have to believe that there is life beyond your diagnosis …
Don’t wait until it is to late to adapt to your new life.” — Harry Urban 2015-04/05
Kelli McGowan: “I’m not escaping it
I’m embracing it” — 2016 Jan 28.
Robert’s ASAP blog entry is at >> http://lbdlivingbeyonddiagnosis.com/blog/asap .
Find PURPOSE in current life
Your post-diagnosis purpose (or plural purposeS) may be continuation of pre-diagnosis purpose … or there may be brand-new purpose.
On learning he had terminal cancer, neurologist Oliver Sacks wrote, “I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. … I shall no longer pay any attention to politics or arguments about global warming. This is not indifference but detachment — I still care deeply … but these are no longer my business; they belong to the future.”
After developing dementia symptoms over the previous 12 years, on learning my dementia was probably irreversible and progressive, I re-evaluated my priorities. Like Oliver Sacks, I discovered a feeling of detachment for politics and other issues over which I had little control. I mostly lost interest in anything that was not in my own sphere of influence. Oliver Sacks put it well; it is no longer my responsibility.
Again we are back to “person-centered” because each person is so very different. But when we receive a life-changing diagnosis it can trigger a re-evaluation that sometimes reveals obvious priorities that have been subordinated to “time-urgent” everyday trivialities.
At your own deepest levels, what drives YOU? Historically, biologically, spiritually, socially, etc; what makes you more of YOU? For me, I discovered that my identity was reflecting Truthful Loving Kindness. To my surprise I can achieve that goal wonderfully as a Person With Dementia. But also I requested that i have access to craft supplies and working space even if i am no longer able to use them in a fashion that OTHERS would expect. Touching those materials brings an important part of what makes me feel alive. Various types of dance have always been an important part of me being me, but with my balance issues in the past 10yrs, now looking into the option of wheelchair dance. Spiritual contact time makes me feel alive. Immersing my body in warm water makes me feel alive (whereas a shower feels like being attacked by water). For me, short periods of time with meaningful intense communication is important. For YOU, those priorities may be entirely different; you may crave adrenaline, travel, or being surrounded by large groups of family and friends. That is okay because every person is different. If those things have always been on your “bucket list” then maybe you should see which ones you can still deal with.
Chris Norris, in “Music Reawakening Report” ( http://www.arts4dementia.org.uk/music-reawakening-report ) says “I can still play the horn, and that is what drives me”.
Jeff Borghoff talks about Transcending and transforming IDENTITY in 5-min video at https://www.youtube.com/watch?v=RNx3yp-rIc8 .
Agnes Houston: “You can have a life after dementia, but it’s not handed to you on a platter. You’ve got to choose your path and it’s scary.” — 2016-01/07
Brian LeBlanc advocacy: “Thru my alzheimer’s journey, I have finally found what I was supposed to do, and it is the best job that I have ever had in my life … that I don’t get paid for” … ” get up & make a difference” — Brian LeBlanc 2015-09/17
Rick Phelps started Memory People Support group: “We Don’t have a cure, but we do have each other” — Rick Phelps 2015-10/04
Vicki Wells Bedard’s photo project: “I’m trying to string the good moments together, much like a rosary for my heart” — 2015-08/25
Harry Urban’s advocacy: “If I was magically cured … I no longer would have a purpose in life and I wonder if I would lose the gift to help others.” — 2015-10/02 … “Being diagnosed with Alzheimer’s gave me a meaningful purpose in life and made me enjoy the things I am still able to do.” — 2015-09/07 … “I no longer fear living with Alzheimer’s, my purpose in life is to help people find the answers to their questions and give them Hope living beyond their diagnosis. If I can do it, so can you.” — 2015-07/08
Terri Gadal: “Believe in yourself and all the possibilities within. Allow the unfolding of a greater spirit to begin. We already have all the elements we need as a gift from the divine. We have the power and vision necessary to remove the obstacles and blocks in our lives. To create a new path in our destiny. To follow the high road and to always be grateful for the blessings in our life.” — posted 2013-10/03
Further detail at https://truthfulkindness.com/2015/09/11/my-philosophy-on-personhood-and-dementia-person-personality-perspective/ & https://truthfulkindness.com/about/ .
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