I do not feel that the “best” of my grandmother was gone in her later stages. Her context was gone. The ability to delay gratification was gone. The ability to even know what she wanted or who she was … was gone. But her visceral response to life was NOT gone. Having my grandmother as a Dementia Mentor (even if only in my memory), has been a tremendous source of hope and example. In my final days I hope the same can be said of me.
“Music is Connection (despite dementia symptoms): to myself, to others, and to the unseen rhythms connecting each living entity.”
… I choose to focus on life’s blessings (and the blessing in opportunity of 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.
For many years alarms were wonderful tools to meet needs … but this year? … I think I have progressed past their usefulness. grr-r-r-r !! … multiple other intensified symptoms in past couple weeks 😦
Tru here. Have you ever noticed that all of my blogs now begin, “Tru here”? There is a good reason for doing it that way, but I got the idea from Richard; at the time he was beginning all his blog entries with the phrase, “Richard here”. Actually I only spoke personally with him a […]
… getting ready for the day can consume much more time and energy than we or our loved ones are prepared for …
I was asked to think about what phrases and actions leave Persons With Dementia symptoms feeling left out. … Includes: Phrases that exaggerate my symptoms, Phrases that minimize (invalidate) my symptoms, Phrases that ignore my symptoms, Phrases that minimize (or ignore) my life-expectations, Actions that exaggerate my symptoms, Actions that ignore my symptoms, and Actions that exaggerate my “different-ness” or “alone-ness”.
All of these situations involve showing respect, embracing who the person is, and meeting them at their varied ability levels (because some aspects of abilities are still very high, and some quite low).
How many of our own children, grandchildren, or others watching us now, will be dealing with these same symptoms in future years?
We all change – but we do not become a different person. The facets of our character are differently reflected with the changing phases, abilities, frustrations, angers and fears, but we are at our basic essence the SAME person – with different aspects emphasized.
I am beginning to eliminate the “PWD” label from by own vocabulary.
I will NOT go to each one of my friends who have dementia symptoms with the need to discuss diagnosis issues, especially with the recent changes is terminology and definitions. Instead I will attempt to change my own phrasing, titles, and pictures, in both blog and newsletter, with efforts to minimize misunderstandings. But this will take time, so please show patience, but also do not be surprised at the changes.
So far this month I have posted pages from the following persons with dementia SYMPTOMS who have shared their lived experience: Cecil Ristow, David Kramer, Harry Urban, Janet Pitts, Kevin Smiley and Max McCormick. Thank you so very much for your generosity of letting the public into your private world ! My hope is that your words can be applied to help and encourage other patients, care-partners, and professionals.
