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 We hold these "truths" to be not at all evident 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post We hold these "truths" to be not at all evident
At my local caregiving group last night we welcomed a new member whose mother, a retired architect, was recently diagnosed with LBD. A couple of CGs talked about recent or planned trips with their LOs.

And we discussed the so-called "conventional wisdom" we've heard about dementia.

I keep reading advice to "keep an active mind" and to "keep learning new things" to stave off dementia. Ha! Is there really any evidence that more people with "inactive minds" (whatever that might be) get LBD more often than intellecutually active people? Keeping active, socially, spiritually, physically, and intellectually, is probably good in its own right. It certainly helps prevent boredom and might contribute to preventing depression. Preventing dementia? Gee, I don't think so. Every time I hear that advice I think, "You mean this is Coy's fault? Lewy wouldn't have taken up residence in his mind if it had been more active?" My full response is not something I could print here without a lot of #$% characters. 8)

And we hear about the need to keep dementia patients in familiar surroundings, not to change routines, etc. That certainly applies in some situations and at some stage for some patients. Caregivers learn to recognize the value of that conventional wisdom when it applies. But paradoxically, dementia patients (at some stages and in some circumstances) can benefit from new surroundings and new stimulation. Dr. Boeve always asks Coy about any trips he has taken and what he has planned. Travel and short field trips and just getting out and about is not possible for every LO at every stage, but it is valuable while it lasts.

What about you? What are your thoughts on these two frequently mentioned "truths"?

Do you have other pet peeves about conventional dementia "wisdom"?

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


Tue Apr 19, 2011 8:28 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
Really good questions, Jeanne. It would be interesting to see a scientific study about people who kind of let their minds and bodies go, the incidence of dementia in that group, and compare that to people who are very physically and mentally active.
We all have lots of anecdotal data about our LOs, friends, acquaintences, etc. So far, my observation is, you never know who or when or where one of these neurological diseases will strike. Several very close friends of mine have fathers recently dx'd with PDD, LBD and AD. These men are very bright, have been extremely active intellectually and physcially active all their lives. Two are retired university professors, one a retired hematologist, and another a retired banker. One, now deceased, was the husband of a good friend and he was a very successful entrepreneur with a Harvard MBA. They all read a lot, attended cultural functions, had very active family and social lives. They are all in good shape physically and exercised. So, my own anecdotal evidence says "leading a full life and keeping mentally active does not prevent dementia-related illness" BUT it is anecdotal evidence.
Having people in familiar surroundings does allow our LOs to be able to function better with daily things, I think, but on the other hand, getting them out and about is a refreshing and stimulating experience most times. Of course for some, getting them out of their usual habitat can be frightening and upsetting. My dad HATED going on outings with the ALF staff, but he loved it when I, my sister, one of my kids took him out even for a short ride. With familiar people looking after him he loved to go out, till his last months. Then he didn't even want to go to the dining room so he was in bed 24/7.
I think it's a great idea to keep our minds and bodies active for as long as we possibly can. Will that help prevent dementia? If it did, there probably wouldn't be many people so debilitated by it, IMHO. 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.


Tue Apr 19, 2011 8:52 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
Jeanne,
These are indeed good questions, I think if you are going to get a dementia type illness nothing will change it, perhaps keeping the mind more active in the early stages helps but who really knows if it is just days,weeks or months.

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!

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Irene Selak


Tue Apr 19, 2011 9:06 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: We hold these "truths" to be not at all evident
Dale was an attorney who owned four businesses. He taught Law. He and I owned an International Insurance Brokerage. He was a C.L.U. He sold Nautilus Equipment to the Army worldwide and designed fitness rooms. He was always 'thinking outside the box.' He read constantly. He loved athletics. He worked out in our own gym. He was a great dancer and played the drums.

Don't tell me he allowed his mind to rot. That's putting the blame on the victim. That thinking always annoys me.


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


Tue Apr 19, 2011 9:07 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
Truth one…as it applies to me…

if exercising my mind would have stave this off….I would have been immune for another couple hundred years…minimum

the last three years were spent using my mind as close to 100% of the time using mind in systems analyst production and the pursuit of tranisistioning out of that with another going business…all time spent 'using' the mind to beat the winding down clock of abilities….

truth one for me….was a waste of time…it made my problem just a whole lot more obvious

if I could do those over….no more brain drain than what should normal is what I would do now…so, maybe it didn't speed it up….but, it sure may it show up

now I realise that the original intent of the statement is probably when the brain isn't being used….but, from what I percieve of what others think about what is going on in mind and what is actually going on in there….there is problem with that too

….traveling has become hard…because it is so tiring…so much more tiring than it was before…so any travel, to be sure….even at the early stage that I am at….has to be planned at my pace…not yours….or split up….with some at my speed….then let me sleep somewhere….and go do some of the trip at your speed….I want you to have fun at your speed too.

that being said….I am thinking about (with some amount of seriousness) dumping all worldly possessions except a camera….and traveling….

_________________
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


Tue Apr 19, 2011 9:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: We hold these "truths" to be not at all evident
Derek was a PhD biochemist who did consulting work after retirement and worked very challenging puzzles [Cryptic puzzles from the London Daily Telegraph] every day until he was quite ill. Personally, I think it's utter BS that dementia can be prevented. In fact, recently, it was in the news that there is 'no evidence that keeping the brain active' has any effect on the prevention of Alzheimers. I would guess that would apply to other dementias, as well.

_________________
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.


Tue Apr 19, 2011 9:30 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
Craig, if you are serious about wanting to just dump everything except your camera and travel for a while, that might be just what you need at this point. Is that feasible to do? Would your wife go with you or do you have another person who is willing to do this with you? I'd hate for you to be away somewhere and have a new symptom start that you need a lot of help with.
If I were told tomorrow that I had a serious illness, but I could still travel, I would certainly go to some of the places that I haven't gotten to yet. My list is long, and I have been to many of the places I want to see, but the world is a big place and there are many more places I want to get to.
Where would you want to go first if you can travel? 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.


Tue Apr 19, 2011 9:40 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
BayouCajun wrote:
if exercising my mind would have stave this off….I would have been immune for another couple hundred years…minimum

any travel, to be sure….even at the early stage that I am at….has to be planned at my pace that being said….I am thinking about (with some amount of seriousness) dumping all worldly possessions except a camera….and traveling….


Criag, I'm glad to see that you still have your wit and humour! You really weren't due for dementia in this century!

The travel I do with Coy now is not at the pace we used to be able to maintain. But we both still enjoy it. Several years ago we cruised in Tahiti. Next month we are taking a bus tour in South Dakota! OK, not an exotic foreign land, but we are truly looking forward to it.

In a recent Webinar put on jointly by Aging Services of Minnesota and Alzheimer's Association, there was a list of the benefits of early diagnosis. Among the more familiar items was one that I think should get more air-play: it gives people a chance to live their dreams. The example was the couple who left the consultation where one of them was diagnosed with dementia and immediately began planning their trip to Hawaii. They always wanted to go, but kept putting it off "until the kids finish college," "until the mortgage is paid off," etc. There was always a reason to go later, not now. But now it was clear that this is "later."

May you find lots of ways to live some of your dreams now, Craig!

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


Tue Apr 19, 2011 10:04 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
Lynn,

1) I have a daughter that already had a week long trip with her two children to DisneyWorld planned….I need to figure out how to get there for a day or two…it is the end of may

2) I have a son…just left for a two year contract in Belgium…he was in the UK and Germany for the last 5 years and I didn't go as I was fighting trying to hang on and beat the invisible ghost…answer….Europe…..I was last there in 76-77…I was stationed at RAF Alconbury about 60 miles north of London….I have wanted to go back since then….I created such a love for Europe and traveling….in my son….look where he is at…

3) I have a 31 foot travel trailer that has been parked for the last 4 years at a storage facility….I can't manage setting it up, or I would be done for a day or two…won't be able to sell it for what I owe on it…can't make another payment on it….might be living in it…I can dream….I would like to get help hooking it up….and travel across the country….okay….here is the real answer….

I would hook it up….and leave it hooked up…and drive and drive….make it about 4 hour drives….park in pull thru campsites….scenic state park types….with bank or pier fishing….I have a comfortable folding chair…stay parked for as long as I want….if I want to see something call that rent a car company that picks you up….get tired of that place….drive 4 hours to the next one….

_________________
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


Tue Apr 19, 2011 10:16 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
Jeanne - parts of South Dakota look like another planet! We really enjoyed our short trip through the northern part of the state from the eastern to western borders. There's lot of great wild west history and places to see there. Hope you get to Sioux Falls on your trip. Sounds like a great adventure.
Craig - we've driven 44,500 mi. in the past 3 years in our small motorhome. We have been to many national parks, state parks and other wonderful, scenic places, so I really do understand what you are talking about. We have had 8 major trips around the country in that time, have had some wonderful adventures and met some very nice people, some of whom have become our best friends. Will be hosting a young Australian couple next week whom we met in a couple of state parks in Mississippi a few weeks ago.
It is a great way to see wildlife and get to places off the beaten track, as I'm sure you already know. The cacti in the Sonoran Desert are probably starting to bloom now, and I'd love to get back to AZ & NM to see that.
We love Europe and have only been to a few countries there. Want to go back for several months at a time, maybe Greek Islands next trip. Spain has been my favorite so far.
If you do get off on your adventure, let us know where you are and what you are doing! 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.


Tue Apr 19, 2011 10:39 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
mockturtle wrote:
Derek ... worked very challenging Cryptic puzzles from the London Daily Telegraph] every day until he was quite ill.

Lordy, Pat, Derek isn't due for dementia any time this millenium. Too bady Lewy didn't know that, huh?

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


Tue Apr 19, 2011 10:46 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
I'm noticing that most of the dementia patients, not just LBD, but all dementias, that I hear of have had high intellect types of careers. But do you also notice that most of the careers mentioned here are also high stress? Craig, it sounds like our professions are very similar. I KNOW you were dealing with high stress. And I do know that stressful situations are very hard on Mom. Maybe there is something to that.
Mom, also, was very active. She worked as a church secretary until just a handful of years ago. She was active and an officer in several civic and church organizations. Now she can still read, but just sometimes and gets tired doing it.
The idea of travel is interesting. Craig, have you thought of an Elderhostel trip? I think eligibility starts at 50 or 55. Tour staff for those might be better able to handle any needs that might come up.
My sister wants to take Mom to a family wedding in mid-June. It means a trip from Minneapolis to Aberdeen, SD. I've been against it, but you all are making me reconsider. I'll talk with Mom's doctor about it. It would mean a lot to my nephew.
Once someone gets to about the mid- to middle severe stage, I'm not in favor of pushing someone into mental exercises on the remote possibility that this might slow down the progression of the disease. First, I'm concerned that it could be very stressful and disappointing for the LO and for the whole family. The other reason is kind of defeatist, but I can't help thinking that now that Mom can barely talk, can't seem to get her mind to tell her feet what to do in order to walk, and is physically weak and doesn't remember things within hours of them happening, the faster things progress, the better. Is that awful of me?

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Apr 20, 2011 2:12 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
No Kate, it's not awful. Who wants to see their LO continue to suffer and have the suffering get even worse? I sure didn't, but that's what we had to do. It was very painful for everyone. My dad's friends would leave his room sobbing, and telling us that they could not believe how bad off he was..... Wanting their suffering to end is a good thing, in my book.
There was a wonderful poem on Nat'l Public Radio this morning about this topic. I'll see if I can find and post it. 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.


Wed Apr 20, 2011 2:22 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
Kate,

thank you…Road Scholar…thats me….I am packed and ready…can't wait to read that site later today….I would not have thought about that…definitely don't have any more excuses….

about the wishes…I remember watching both of my parents waste away with cancer….particularly while massaging my mothers legs that wouldn't move on their own any more….she was 62…and hoping she would go to sleep and be at peace….and the frustration of only having prayers to offer

it takes on a new meaning thinking about it right now, because it is me that I am thinking about….thanks for sharing your struggle, seems perfectly normal and loving to me

_________________
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


Wed Apr 20, 2011 2:41 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
Here's the poem I heard this morning:

End of Days, by Marge Piercy

Almost always with cats, the end
comes creeping over the two of you—
she stops eating, his back legs
no longer support him, she leans
to your hand and purrs but cannot
rise—sometimes a whimper of pain
although they are stoic. They see
death clearly though hooded eyes.

Then there is the long weepy
trip to the vet, the carrier no
longer necessary, the last time
in your lap. The injection is quick.
Simply they stop breathing
in your arms. You bring them
home to bury in the flower garden,
planting a bush over a deep grave.

That is how I would like to cease,
held in a lover's arms and quickly
fading to black like an old-fashioned
movie embrace. I hate the white
silent scream of hospitals, the whine
of pain like air-conditioning's hum.
I want to click the off switch.
And if I can no longer choose

I want someone who loves me
there, not a doctor with forty patients
and his morality to keep me sort
of, kind of alive or sort of undead.
Why are we more rational and kinder
to our pets than to ourselves or our
parents? Death is not the worst
thing; denying it can be.

"End of Days" by Marge Piercy, from The Hunger Moon: New and Selected Poems, 1980 - 2010. © Alfred A. Knopf, 2011. Reprinted with permission.

_________________
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.


Wed Apr 20, 2011 3:55 pm
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