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 "Unlocking the Silent Prison" 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post "Unlocking the Silent Prison"
Someone on the Link2Care California discussion group posted a link to this article in today's Parade Magazine. It's worth reading...


http://www.parade.com/health/2010/11/21 ... rison.html

Unlocking the Silent Prison
Caregivers are learning a better way to communicate with Alzheimer's patients
Parade Magazine, November 21, 2010
by: Christine Wicker

Eighty-year-old Mary studied her only daughter's face intently. "You're not my Susan," she said.

Susan cried as she recounted the incident to Michelle S. Bourgeois, a speech-pathology professor at Ohio State University who is an expert at communicating with people who have dementia.

That's when Bourgeois suggested that Susan create memory flashcards. "Your mother will never forget you," Bourgeois told her. "She just needs help remembering."

The next week at the nursing home, Susan said, "Mom, I have a gift for you" and gave her two photos. Under one she'd written, "This is my daughter Susan at age three"; under the other was "This is my daughter Susan now." Mary studied the photos, then looked at Susan and said, "As beautiful as ever."

Bourgeois is part of a group of scientists whose work marks a sea change in how caregivers deal with people who have dementia, focusing on what they can do rather than on what they've lost. "People tend to treat these patients as if they're not the persons they were," says John Zeisel, president of Hearthstone Alzheimer Care, Ltd., whose six residences use Bourgeois' techniques. "But they're still here."

Bourgeois' work grew out of her Ph.D. research in the 1980s, when she developed some of the first memory books, which use pictures and sentences to help people with memory problems -- including Alzheimer's patients -- recall past events. Alzheimer's disease, which affects up to 5.3 million Americans, first strikes the hippocampus, the part of the brain that is critical for learning and memory processes. Typically, long-term memory and certain kinds of skills like reading (which is overlearned so it is automatic) are less afflicted.

"Even when dementia is so advanced that people cannot speak, they can read if the words are large enough," Bourgeois explains. "We know because they smile, make pleasant sounds, and stroke photos of loved ones with captions."

In contrast, she says, "Spoken words literally go through one ear and out the other. Patients understand, but they can't store the memory. That's why they ask the same question again and again."

A woman at one of Bourgeois' lectures reported that her father would repeatedly ask, "Where are we going?" during their weekly drives to the doctor. Bourgeois advised her to answer his question -- and also write it down on a notepad and give it to him. When he asked again, she should say gently, "The answer is on that notepad." When the woman tried this out, she said that her dad looked at the notepad, out the window, and back at the notepad. After that, he stopped asking, "Where are we going?"

Similar techniques have been used to deal with anger and anxiety in people with dementia. When a patient refused to shower, Bourgeois told her nursing aide to make a card that read, "Showers make me feel fresh and clean" and give it to her after saying it was time to shower. The technique worked.

With a grant from the Alzheimer's Association, Bourgeois hopes to next dispel the belief that Alzheimer's makes people miserable. Using pictures with captions, she is asking patients about their quality of life. "We find that if caregivers aren't stressed and in a hurry, if the patient is well cared for, and if they feel safe and in a good environment, they think their lives are good," she says.

Bourgeois has taught thousands of caregivers her methods, and they've taught thousands more. When she discovered over 20 years ago that memory could be reclaimed with simple tools, she set herself a high goal -- one she still holds: "I want families to remember these as happy times in their lives."


Mon Nov 22, 2010 1:58 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: "Unlocking the Silent Prison"
These may be good for memory loss but they don't help with delusions.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Nov 22, 2010 10:27 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: "Unlocking the Silent Prison"
thanks robin.. wonderful article.. getting hubby a couple photo albums for christmas and we can start making them for him to enjoy .. and i havea ton of 3 by 5 cards, we can make flashcards... great ideas!!

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Nov 22, 2010 10:44 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: "Unlocking the Silent Prison" - Pat
Pat... I noticed your post about memory problems vs. delusions. Dale is now delusional almost all of the time. Tonight, he again asked if 'they' were joining us for dinner. He said they made a duplicate of our house and we live in only one of them. (I know that's typical.)

There is no sense that he is anxious or worried. The delusions are now a regular part of who he is. He just wanders around looking at things that might be evidence.

At dinner, I said, "I'm sorry, honey. I don't see the people. They are imaginary." He then asked if my sister saw the 'imaginary people.' I said she did not. There was no reaction. It's as if he no longer understands the word 'imaginary.' The concept escapes him.

This is definitely not loss of memory.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 22, 2010 8:22 pm
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Joined: Wed Aug 11, 2010 2:34 am
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Post Re: "Unlocking the Silent Prison"
Dad told me "Things are happening here and they are real" about the ALF he resides in. Then he got upset just sobbing saying how he can't get these delusions out of his head it is constant all day and he feels helpless to stop them. I couldn't do anything but hold his hand and say nothing. I promised myself I wasn't going to cry this visit.


Mon Nov 22, 2010 8:32 pm
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Joined: Tue Aug 17, 2010 9:20 am
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Location: So Cal
Post Re: "Unlocking the Silent Prison"
Kelli,
My heart aches for you and what your dad is experiencing. I think some of the others reading your post may be able to make recommendations of meds to speak about with his docs, but I just want to say I'm sorry that you (that we all) have to go thru this. I hope it helps a little that we are all here for you. And your dad is lucky to have you. Hugs, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Mon Nov 22, 2010 10:45 pm
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Joined: Fri Nov 05, 2010 11:30 pm
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Location: southern cali
Post Re: "Unlocking the Silent Prison"
kelli.. so sad that you and your dad are going thru this,, or any of us for that matter.. i hope he feels your love...

we are just starting to go thru the delusions and the sadness and confusion in my hubbys eyes, when it happens, just breaks my heart.. he keeps saying how did we get here??? what is happening?? and like you, all i can do is hold on and say we are ok!!!. we are safe!! most times that is enough.. except the times he thinks im doing something and then the anger and hurt in his eyes are terrible.. and there is nothing i can do, except try and redirect...

so far ice cream works great!!!!

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Nov 22, 2010 11:05 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: "Unlocking the Silent Prison"
Dear CDW.... I looked for your name and couldn't find it. I grew up in So. California so I feel a connection with you even though we are now in Florida.

Dale's delusions have been intermittent until now. In recent weeks, they have been daily and sometimes all day. He talks often about 'them' and 'their' plans. Like your husband, I see sadness and something close to fear in his eyes. He keeps thinking he can 'beat this' - but with every passing day, it's more obvious how relentless the progression is. He used to leave the 'people' at home when we went out to the grocery or whatever. Now, he takes 'them' along and I'm reluctant to allow him out of my sight. Last week, he agreed to wear a bracelet from the Sheriff's office - so he knows.

This all breaks my heart too... and I agree that this is painful. I just wanted you to know I was listening to you. I share your sadness.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 22, 2010 11:42 pm
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Post Re: "Unlocking the Silent Prison"
cdw=Cindi


Mon Nov 22, 2010 11:46 pm
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Joined: Fri Nov 05, 2010 11:30 pm
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Location: southern cali
Post Re: "Unlocking the Silent Prison"
leone.

. im so sorry you are going thru this.. i read your posts and others with tears in my eyes...

as ive mentioned before im not even sure hubby has lewy... and so i hope its ok if i stay on here, while i find out... the pain, the sadness and the greiving for what is and what could have been, are the same....

yes and i see fear as well in his eyes.... and the wondering what is going on??.. what is he doing wrong?? why is this happening??.. his aquaintances are just starting to retire and travel and enjoy.. and hes fighting this horrible illness.. and losing his driver lis... just tops the cake.. all of his feeling of self worth is gone... his job, his car, his independance... the old cars he saved to work on in retirement.. he cant figure how to fix any more and he cant drive them if he could!!.. im so glad he is starting on this anti depressant.. i hope that adds to helping him feel better about himself...

sorry leone, was just meaning to write and say thanks.. and all of this came bubbling out!!

where did you live in so cal?? i'm in north san diego county.. lived here all my life ,so maybe we crossed paths at one time... i have a few online art friends that live in florida.. never been there but heard its beautful!!

take care and have a good day!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Tue Nov 23, 2010 10:40 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: "Unlocking the Silent Prison"
Cindy ....

First, I graduated from Huntington Park HS and Fullerton U. My last home in California was in Newport Beach. However, my daughter (b. 1957) lives in San Diego. My sister and I meet annually at her time share in Carlsbad - Aviara. We'll be there at the end of January.

Second, ...as far as I know, Lewy isn't positive until the autopsy. Dale was first given Cymbalta by a neurologist - and I didn't think 'worry' was his problem. I found the 'spouse support' group online and they helped me with 'what questions to ask.' After contact with some 6 neurologists, we finally found one who recognized his symptoms (hallucinations and delusions) and treated him appropriately. He now takes Sinemet and Seroquel. Worry was not his primary problem. (Though it might be mine... :lol: )

I'm glad you are here. Some days are worse than others. My online friends are the only ones who really understand.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Nov 23, 2010 11:15 am
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