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 We hold these "truths" to be not at all evident 
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: We hold these "truths" to be not at all evident
wow, thank you so much for that Lynn. It really strikes a chord.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Apr 20, 2011 4:06 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: We hold these "truths" to be not at all evident
Kate,
Is it awful of you ?
Of course not, you obviously love your mom and you don't want her suffering to continue, to me thats an unselfish act on your part !

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Irene Selak


Wed Apr 20, 2011 4:45 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: We hold these "truths" to be not at all evident
Kate,
I completely understand. My dad keeps trying to find medications and other ways to slow it down. Why? I don't see any benefit in prolonging this very difficult, stressful process, either, but I feel awful saying it. She's not enjoying life--not talking, watching the same videotaped tv shows over and over (in the same day), can hardly walk, falls all the time, etc. My dad has heart problems, and I worry how the stress is affecting his health, too.

As for the "truths", my mom was a nurse manager at our city's hospital and retired about 6 years ago. She was very health conscious--exercised regularly and ate well. She'd read that keeping her mind active would help hold off dementia, so even before she knew she had it, she was doing sudoku and word puzzles in the paper every day. She read voraciously and was in a book club until recently (for awhile she'd go but not say anything, and then finally, she just stopped going at all). She was also a church elder until recently and only a few years ago retired from the School Board. She was still attempting sudoku and word puzzles as of a year ago, but she can't do them anymore. She can't focus to read anymore, either. She'll listen to books on tape, but we don't know if she's following the story.


Wed Apr 20, 2011 8:12 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: We hold these "truths" to be not at all evident
LTCVT wrote:
I want someone who loves me there
Thank you, Lynn. That is so beautiful and expresses so well what I know I did well for Dale. Death is not beautiful .. but love is. He and I were alone... with my hand on his cheek.

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


Wed Apr 20, 2011 10:42 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: We hold these "truths" to be not at all evident
Kate,

Elderhostel/Road Sholar…..

when I have to give up me truck….when I can't drive it anymore….I might consider selling it to finance a couple of trips…that might make it a little easier….I am going to pick out those trips...

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Apr 21, 2011 1:26 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
irene selak wrote:
As to new surroundings, I know of very few with LBD who are comfortable elsewhere, the whole thing with this illness is what is familiar to them and for my husband it was home. Just my .02 worth!


I want to provide a different perspective on this, partly for the sake of people like Tonya and Craig and others with LOs in the early stages, and for lurkers and new people wandering in.

Irene, you certainly know many more people than I know with LBD, in your volunteer role. But I suspect that most of the time when people find this website they are already into advanced stages. As diagnostic abilities improve and LBDA and others are successful in spreading the word, more and more people are going to realize what they are dealing with in early stages. And I am not sure the "familiar is better" approach always applies to them.

In his "wild man" first year, Coy was not comfortable elsewhere. He was not comfortable at home. (He didn't recognize he was at home.) His favorite chair was no more a comfort to him than a chair in a waiting room. As he got treatment and settled into early stage (where he has been for 7 years so far) he does like the comfort of home, but he also likes the stimulation of new experience. He loves to take trips. He loves outings -- to the fair, to museums, to a park, to board a replica of one of Columbus' ships. All of this has to be geared to his stamina and energy level (and, I might add, mine! It can be a lot of work providing these opportunities to someone with impairments.) He loved it when I spruced up our bedroom with new curtains and a spread.

He likes comfortable reruns of shows and movies he's seen before. But he also likes new movies and things like nature documentaries about unfamiliar topics. He still wears his favorite beat-up almost-worn-out jacket in preference to most others he owns. But he was absolutely thrilled with a new jacket he got for Christmas.

I know that Coy is not unique. Other people in my support group talk about trips or outings with their LOs, or talk about what worked well in earlier stages.

I started out on the caregiving journey thinking, "Oh, I'd better try to keep things as close to the same as long as I can. I'd better not introduce new activities or experiences. Keep it familiar." And no doubt that conventional wisdom is very appropriate for many dementia LOs. But it is not true for everyone. I'm glad that Dr. Boeve encouraged new experiences for Coy. It has really added to his quality of life.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Apr 21, 2011 1:38 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: We hold these "truths" to be not at all evident
I took my MIL on many outings in the early stages. She really enjoyed them. And as with you, we adjusted the type and length as she progressed. She may not have remembered them the next day, but she truly enjoyed them at the time of the event. Unfortunately, our outings are now down to an ice cream cone at the Dairy Queen after a doctor's appointment. Not much of an outing, but it has become our ritual. (And she gets to eat a LOT of ice cream because of trips to regular doctor, neurologist, plastic surgeon, cardiologist, and, now, the orthopedic surgeon.) Life doesn't have to stop just yet - it just adjusts.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Thu Apr 21, 2011 8:44 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: We hold these "truths" to be not at all evident
I look back on those trips to the Dairy Queen as the highlight of my dad's week when he could still go out early last summer. He really enjoyed getting out and doing something, even if it was riding in the car for 10 min. By the last trip I took him on to the Dairy Queen, he wanted to go back "to that place where I live now" within 2 min. I insisted we go get the ice cream first and then go back. He couldn't feed it to himself, or hold it, so that was a real challenge on our way back to the ALF. There was a point at which he didn't want to go on our little adventures any more. Enjoy those outings no matter how glamorous or not they are. There will be a time when those will end so if your LO can handle it now, I'd encourage you to do all you can to get out and about. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Apr 21, 2011 2:59 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: We hold these "truths" to be not at all evident
hummm….I haven't had a banana split in about 40 years….I have went to sonic twice in the last month…good stuff

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Apr 21, 2011 3:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: We hold these "truths" to be not at all evident
If you love 'em, there's no better time than the present to treat yourself! Unless it exacerbates some health issue, that is! My dad loved the choc. milkshakes and hot fudge sundaes at DQ. We bought lots of those when he moved to the ALF since it was something he really enjoyed and his weight was dropping. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Apr 21, 2011 3:18 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: We hold these "truths" to be not at all evident
Lynn,

the banana splits arei strickly medicinal….potassium for muscle cramps

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Apr 21, 2011 3:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: We hold these "truths" to be not at all evident
Oh, got it! I'm glad you haven't lost your sense of humor! I wish I liked bananas, they are so good for you.
Here's another travel idea - there are many travel agencies that have last-minute deals on trips when people have to cancel because of last-minute emergencies. We love to go to all-inclusive resorts because it's so convenient to have everything right there, you don't have to find a restaurant off-property, everything's already paid for, activities are included, etc. Often you can get deals for 40 - 50% off if you are willing to wait till the week before to find out where you are going.
For instance, Club Med and several other places just ask you "do you want to go to a warm place or a winter activity type of place? What airport will you use?" You tell them your preference, and then they let you know a week ahead of time where you are going. So, if you want to go somewhere warm, for instance, you might get booked to the Dominican Republic, or St. Maarten, or wherever. Similar with winter/ski vacations. A friend of mine has done this frequently and has been very happy with the places they'v been.
I'm thinking about doing it myself since it is snowing here in VT today and I can't stand cold weather in April!!! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Apr 21, 2011 4:28 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: We hold these "truths" to be not at all evident
I have only been to one all inclusive….went to 'couples' in jamaica….it wasn't expensive and was very relaxing…had my first and only body massage there…we had a great time there…you just gave me another idea….thanks….I had forgot all about that trip….my wife really enjoyed that trip

I looked at the elderhostel/road sholar trips….most are pretty physical…

I am looking at buying a portable scooter as soon as I can….I can walk and stand…just not for long without pain and I am always afraid I am going to fall…I don't leave the house without a cane…

so, any trips that include walking more than a block at a time….will have to accomadate a scooter

I have never been on a cruise….don't count the channel or the Maine to Nova Scotia Cat….so a cruise sounds nice….or maybe one of those scenic train rides

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Apr 21, 2011 5:00 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: We hold these "truths" to be not at all evident
BC,
Have you considered a walker as I think it will give you more even stability, where the cane is more one sided!

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Irene Selak


Thu Apr 21, 2011 5:08 pm
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Post Re: We hold these "truths" to be not at all evident
Quote:
Is there really any evidence that more people with "inactive minds" (whatever that might be) get LBD more often than intellecutually active people?


Great question! There's not a definitive answer yet but we do know something about the effects of intellectual activity.

The current wisdom is that intellectual activity does have positive effects on your brain, in that it creates "cognitive reserve" or "neural reserve". You can think of this as actual physical changes in the brain (richer, denser neural network or some such.) This reserve capacity won't prevent the onset of brain damage (Alzheimer's plaques, or Lewy bodies), which are caused by some combination of genetics and environment, probably quite complicated with multiple genes already known to have some possible role. But reserve capacity can delay the onset of symptoms; you can accumulate more underlying damage, because the reserve allows you to work around it for a considerable time. Of course by the time you actually do show symptoms, you may have quite a lot of damage. There's some evidence that people who have higher education actually progress faster when they are finally diagnosed with AD.

A recent article by the Rush University Alzheimer's group (whom I worked with before moving to CA) presents evidence for this in AD - I've pasted the abstract below.

So the bottom line is, it's a great thing to be intellectually active, and it's likely to prolong the time you are healthy and functioning. But even the most intellectually engaged people are not immune from the underlying pathological damage, or from eventually developing all the symptoms of dementia.
Laurel

One reference:
Neurology. 2008 Apr 22;70(17):1534-42. Epub 2008 Mar 19.
Processing resources reduce the effect of Alzheimer pathology on other cognitive systems. Boyle PA, Wilson RS, Schneider JA, Bienias JL, Bennett DA.
Rush Alzheimer's Disease Center, Department of Behavioral Sciences, Rush University Medical Center, 600 S. Paulina, 1020B, Chicago, IL 60612, USA.

Abstract
The cognitive abilities of older persons vary greatly, even among those with similar amounts of Alzheimer disease (AD) pathology, suggesting differences in neural reserve. Although its neurobiologic basis is not well understood, reserve may reflect differences in the ability to compensate for the deleterious effects of pathology by recruiting alternative or additional brain networks to perform a specific task. If this is an effective compensatory strategy, then involvement of additional cognitive systems may help maintain function in other cognitive systems despite the accumulation of pathology.
OBJECTIVE:
We tested the hypothesis that processing resources, specifically perceptual speed and working memory, modify the associations of AD pathology with other cognitive systems.
METHOD:
A total of 103 older participants of the Rush Memory and Aging Project underwent detailed annual clinical evaluations and brain autopsy. Five cognitive systems including perceptual speed, working memory, semantic memory, visuospatial abilities, and episodic memory were assessed proximate to death, and AD pathology including tau tangles and amyloid load were quantified postmortem.
RESULTS:
In multiple regression models adjusted for age, sex, and education, processing resources reduced the associations of tangles with other cognitive systems, such that persons with higher levels of perceptual speed and working memory performed better on semantic memory and visuospatial abilities despite the burden of tangles. Perceptual speed also reduced the associations of amyloid with semantic memory, visuospatial abilities, and episodic memory.
CONCLUSION:
These findings suggest that processing resources may help compensate for the deleterious effects of Alzheimer disease pathology on other cognitive systems in older persons.

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Apr 22, 2011 1:19 pm
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