Quotes Nov 2014

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Tru here.
Truthful Loving Kindness is thankful for family of ALL sorts (including “family” on computer).  This year especially thankful for others who have dementia symptoms and are transparent enough to share their experiences.  These excerpts have either been written specifically to share, or found in public format of blog, Facebook or Twitter.

Anonymous PWD friend 15 Sep 2014: “I have some advice for caregivers with loved one experiencing hallucinations.
1) Exelon works great for me.
2) Remove items from the room that your loved one is having trouble with — belts become snakes – laundry moves and becomes people, etc.  … For me it’s ordinary items left out that can become something else.  Other times things just appear out of nowhere!”

Barry Pankhurst 2014 Nov:
All I want for Christmas
is to be the way I used to be,
with the acquiescence of body and mind,
and the spirit of a bird that flies free
to walk the pathway of life once more …

Chris Roberts 19 Nov 2014:
It’s Christmas!
Joy and laughter, presents and snow
Turkey, crackers, hats and cake
Children playing, noise and fuss …
Stressed and anxious, feeling low
Shouting and music, nowhere to go
Staring, eyes open, tears they flow
Pacing, talking, walking and walking
Heart racing, pounding, I now feel sick
Head spinning and hurting!
It’s Christmas I think.
© chrisroberts

David Kramer posted 16 Nov 2014: ” … it wasn’t easy. Death sentences seldom are, and they tend to throw a wrench into the whole “just live every day to the fullest” idea. … Tiffany told me to cut the “sad crap” and start enjoying every day we have left together. That was the best advice I have ever received. …”

Deborah White Cunningham (wife of PWD) wrote 14 Sep 2014: “Hubby told doctor in no certain words that they are not hallucinations – it’s mirages. Doctor was taken aback by it, so I explained that … easier for hubby to understand it better if I call the hallucinations “Mirages”. … What he and I believe is that “mirages” is something he has known, and the word isn’t as scary.”

George Rook posted 10 Sep 2014:
“Ask me. Listen to me. Work with me.
Invest a little in me now, Save a lot later
and help me live well with what comes my way.
My long term conditions.
My life.

George Rook posted 16 Oct 2014:
” … When the jigsaw
floats apart
… and you just can’t quite get it

Harry Urban posted 22 Sep 2014:
“I try to teach them to dance in the rain
and how to ride out the waves.
It can be done
because I am doing it.
Life is never easy with or without dementia.
It all depends in how you want to live your life.”

Kate Swaffer 16 Sep 2014:
“Treat the symptoms of dementia as disabilities,
then find strategies to help live well with them.”

Kate Swaffer12 Nov 2014: “Personally, I think the people who need managing most often
are the staff of those people with dementia in their care …”

Ken Clasper 12 Nov 2014 excerpt from “The Media and Dementia”:
“… In some cases we have a lot of control as to what is written, where in many others, it’s all down to the reporter or the editor, who may well be out just to get a hard hitting story. I have had the benefit of both sides of this coin, and where the good reporter and editor write your story, so that it’s what you have said, the bad one will rewrite it to get the bad side or negative side of dementia and sadly we see a lot of this these days. This to me proves that many simply use us to get a story, where others are genuinely interested in putting out a good positive story about dementia. …

… While it is good to use the media we must ensure that they are high quality, know about dementia, and are prepared to go that extra mile to ensure the story is correct. Using the media can be very helpful in raising awareness of dementia, but we must make sure that the bad press are filtered out and not allowed to cover our stories. …”

Marion James 19 Nov 2014:
“Hi! My name is Marion James. I am the face of Dementia. I don’t look sick either. I feel like I can still do most things. I can’t drive anymore. My husband has to take me everywhere. He also has to give me my meds. I can’t remember them. I can’t remember what day it is or when my appointments are. Sometimes I can’t remember my coworkers names. I find this all not acceptable. But I keep trying …

Michael Woods 17 Sep 2014:
“Arose this morning aware of the man that I am not,
then forgot the man that I am.
Not an existential crisis,
no panic,
just a state of being
of what it is to be me.”

Robert Bowles re Lewy Body Dementia (LBD) on 17 Sep 2014: “I like to call LBD the disease of many faces. When I wake up in the morning, I never know which face I will be wearing. Throughout the day that face may change many times. The new face may last minutes, hours, days or weeks. I just have no way of knowing. Take a minute to imagine the fastest and highest roller coaster you have ever been on. With LBD, the changes may be slower or faster; and they me higher or lower. We just never know. For me there is one thing that is always constant … My God will supply all my needs.”

 Terri Gadal posted 08 Jun 2014:
I’ve Moved On:
“I slipped away,
and moved on …
Somewhere along the way
awaits another destiny …
I’ll go with it hesitantly,
until I forget and get over
this aging tragedy …”

Tommy Dunne (expert at “one-liners”) 28 Nov 2014:
“My brain is like the Bermuda Triangle; information goes in … and it’s never found again.”
“People ask me why I talk to myself.  I tell them, “Sometimes I need expert advice.”
“Enjoy life; it has an expiration date.”
“The trouble is, my train of thought often leaves the station without me.”

Truthful Loving Kindness 21 Nov 2014:
“… I know you do not see the need to make this a priority in your own life, … yet,
but if you want to be able to “reach” me next year, and the year after,
then these are necessary.  …

Please learn dementia communication techniques NOW while I can still participate in the learning;
while I can gain confidence and security that you have tools
to continue communication in the next couple years … when I cannot.
Otherwise I am alone in the “crowd” of my own family,
terrified of misunderstandings in the coming years.
And screaming to be heard.”

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