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 We hold these "truths" to be not at all evident 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
Thanks, everyone, for your supportive answers. Especially you, Craig. It helps a lot. Yes, Mom made her wishes known in her medical directive and we had talked about it for years. But I haven't been able to stop second guessing myself on this.

By the way, I bring Mom a mini-Blizzard every now and then and more treats on other days. She is diabetic, but she enjoys them so and even the SNF staff and her doctor have said that treats are OK. We're not all that careful about physical health anymore, as long as nothing hurts.

-- Kate

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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]


Fri Apr 22, 2011 1:43 pm
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Joined: Wed Sep 30, 2009 8:25 am
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Post Re: We hold these "truths" to be not at all evident
Next doctor's appointment is Monday. Guess where we'll be going? Luckily my MIL does not have any diabetic issues (nor do I :!: ).

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


Fri Apr 22, 2011 2:07 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
Kate,
I bet she loves thoses treats and you are right as long as they aren't harmful, let her enjoy them.

I use to think our second home was DQ as my husband loved his ice cream and many a day when he was agitated it always seemed to calm him and redirect him .

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Irene Selak


Fri Apr 22, 2011 4:13 pm
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Location: East TN
Post Re: We hold these "truths" to be not at all evident
I think…not only is ice cream good tasting…it brings one back to when a trip to Dairy Queen, Frostop or whatever that 6 foot ice cream cone was called….was a good time…when I was child…it was 'the' reward….(actually banana splits) right next to a trip to Disneyland….so maybe 1) was Disneyland, 2) was banana split, 3) BB gun

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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


Fri Apr 22, 2011 5:20 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
Laurel,
Thank you so much for taking the time to share this research. I'm impressed that over 100 people were followed for years and their histories compared to brain autopsies. That is much more convincing than antecdotal observations, in my mind. But 103 people, however impressive the effort of accumulating this data, can't really prove anything about the entire population, can they?

Is it well established that the "reserve capacity" is in fact built up by intellectual activity? It isn't just that some people are lucky to have more, which might in turn incline them to like intellectual activity?

I think you can see the gist of my dissatisfaction with the popular notion that intellectual activity staves off dementia. In many people's minds (probably not researchers :P ) that translates to "people who get dementia must not have used their brains much." It feels like blaming the victim.

Someone recently sent me a photo essay that included this piece of advice, "An idle mind is the devil's workshop. And the devil's name is Alzheimer's." I don't think that is quite the message of the research, is it?

Jeanne

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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


Fri Apr 22, 2011 8:48 pm
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: We hold these "truths" to be not at all evident
Hi Jeanne,
You're a thoughtful reader! Thanks for asking great questions!

The evidence that intellectual activity changes the brain goes way beyond just one study of just 100 people or so. It really is well established.

The Memory and Aging Project actually has something like 1000 participants, all of whom have agreed to brain autopsy after they die. So as time goes on, we will learn more... And it's a "sister" study of the Religious Orders Study, which has more than 1000 members of Catholic religious orders - nuns, priests and brothers - all of whom also agreed to brain autopsy, and many of whom have died by now. That study also has added a lot to our understanding of how the clinical trajectory while people are alive is related to their brain structure and pathology. There are other studies, like the Alzheimer's Disease Neuroimaging Initiative, trying to figure out how to tell what's going on in the brain without waiting till after death.

And there's also animal research. You can't randomize humans, of course, but there are animal studies where they randomized some animals to a very unstimulating environment and others to an enriched, "educational" setting (rat Montessori school, more or less) and the differences could be detected in the animals' brains at autopsy.

There's a fair amount of evidence that it's not just formal education but many different activities that have an impact; for example, being bilingual changes your brain and creates a kind of reserve. Playing bridge or building model ships or reading the medical literature - anything that makes you think and plan in new ways - can have an impact. All of this is just part of how our brains work. You use your brain to learn something new or think hard about something and make new connections, and in fact you are changing the actual architecture of the brain.

Anyway, I share your distaste for blaming folks for winding up with dementia - unfair! unhelpful! unkind! Anybody's mind can be hit by dementia!

But I also really want to understand what makes it happen, and what role is played by "cognitive reserve". In the best of all possible worlds, we'd be diagnosing people and stopping disease in its tracks before people started eating into their reserves and showing symptoms. I feel like I'm racing this right now with two people I love, my mom (LBD) and my best friend (AD), and their reserves may be buying us just that extra bit more time, and maybe something effective will show up. Sigh.

To me, that's the real message - brains are complicated, we should all try to use them wisely and care for them as best we can, and we need to be especially compassionate and supportive when something goes tragically wrong. (As this community seems to remind us all!)

Laurel

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


Fri Apr 22, 2011 11:22 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
Laurel, have you read anything by Jeffery Schwatz, MD? He is a psychiatrist who has worked on these theories for some years now. I have his book, The Mind & The Brain: Neuroplasticity and the Power of Mental Force. The contention that behavior changes the neural pathways of the brain rather than just vice-versa has been around for a while but is only recently gaining momentum in neuropsychiatric circles. Interesting stuff with possibilities for all of us.

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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.


Fri Apr 22, 2011 11:33 pm
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: We hold these "truths" to be not at all evident
Hi,
I haven't read Schwartz's book but it sounds interesting. I've read a fair amount in the medical literature on the subject of neuroplasticity. Most of the neuropsychiatrists I work with would agree that behavior does change the brain (as well as brain influencing behavior!) A lot of what children are doing is shaping their brains for future use. Of course the potential is there from the beginning - they are hardwired to learn to speak, for example. But if you watch little kids, you can almost see and hear the connections being formed from day to day. (Our grandchildren are 2 and 7, and they live just a few minutes away, so we get a lot of chances to watch it happen!)

And as a teacher as well as researcher, I do like to hope that we have some lasting impact on our students' brains. Though there is a great quote from the poet Auden, "A professor is a person who talks in someone else's sleep." :lol:

Laurel

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


Fri Apr 22, 2011 11:48 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
Thanks again, Laurel. I especially like the image of rats in their stimulating Montessori-type environment, perhaps learning the difference between smooth and rough as they bump into the colorful sides of their maze. :P

Would you care to weigh in on the other piece of conventional wisdom that puzzles some of us? If stimulating activity builds up reserves and helps us counteract brain pathology, is it good to try to continue some stimulation after the pathology becomes evident, or is that just too overwhelming? In other words, as caregivers, should we try to minimize the stimuli in the environment, or to provide opportunties for new experiences? The same old comfortable familiar I-Love-Lucy rerun, or a trip to the Nature Center's migrating eagles display?

Jeanne

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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


Sat Apr 23, 2011 3:26 pm
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Post Re: We hold these "truths" to be not at all evident
Hi Jeanne,
Quote:
In other words, as caregivers, should we try to minimize the stimuli in the environment, or to provide opportunties for new experiences?


From what I know, and a quick look just now at pub med, there is not much in the medical literature to help answer this question! A couple of clinical trials suggest there's some benefit for dementia patients from stimulating activities in a social group, not just alone (sharing memories), and some benefit to music therapy. Of course this is the "average" response, and individuals vary greatly!

My guess - just from reading so many comments from everyone here, and from thinking about people I know - is that it will depend a lot on the individual person and probably on their specific brain damage. Some people (like my dad) are very anxious and stressed by transitions, new situations, lots of company or social settings, and if left to themselves would be happiest at home in a familiar setting, or with people they know. My mom, on the other hand, thrives on travel, new experiences, and social experiences. And it sounds as if many caregivers here are describing changes from lifelong personality traits, so how your LO has always been may not predict how s/he will react now.

Personal opinion: it probably wouldn't hurt to try something new and see if your LO enjoys it - and to be very attentive to their signals (pleasure, interest, attentiveness, vs. stress, anxiety, relief at getting home).

My mom is in very very early stages, probably would not have been diagnosed except that she went to a top-tier neurologist and he did a first-rate work-up including history from my dad and me. She has always been outgoing and adventurous, but my dad has hesitated in last few months to take her anywhere. But my sister, who lives across country, came out for her annual week-to-do-their-taxes, and took her to visit a group of her friends 2 hours away, and she was vibrant and happy and collected the whole time. And I've encouraged my dad to take her with him on errands once or twice a week, and she has definitely benefited. (Anecdote, not research, but I am finding the personal stories here extremely helpful to me...)

I like the migrating eagles idea - maybe I can take her to the Raptor Center here to see the real thing!
Laurel

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


Sun Apr 24, 2011 9:57 am
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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
Laurel,
I think even for the people that have trouble being out of the home, adjustments can be made time wise so they don't get so agitated, such as a short trip to get a treat instead of a big shopping trip. I used to take my husband to the mall, he enjoyed just seeing people and we used the wheelchair and he didn't get to stressed and we always endded up with a trat from the food court ! But I will say if I had shopping to do in and out of stores in the mal that didn't work out for us I guess it was just too much confusion.
We also would go to the boat dock and just sit there and watch boats being launched he was always peaceful there.

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Irene Selak


Sun Apr 24, 2011 2:00 pm
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Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
Ah, Laurel, the time-honored "It depends" answer. 8)

I think very often with dementia, or at least with Lewy, that is the appropriate answer. It depends on personality (lifelong and current), it depends on stage of the disease, it depends on whether this is a "good" day, it depends on how it is handled and presented, it depends on physical health, and it probably depends on things we are not aware of. Sigh. Your advice to try things and watch closely for the "signals" is right on target, it seems to me. It is similar to meds -- what works for my husband has been disastrous for other LOs. Trial and error (preferably educated, informed trial) becomes a way of life.

Research can help with the "educated, informed" part. I am truly grateful to researchers worldwide who make this caregiving journey a little bit less uninformed.

I promised "in sickness and in health, for better or for worse," in full confidence but, gee, I should also have asked for a user's manual! Most of us arrive at the "worse" part with far less preparation and knowledge resources than you have. Your parents and your good friend are really lucky to have you on their side! Not, I'm sure, that a helpful background makes it any easier for you to see the changes in your loved ones. Caregiving is a tough path to walk down, even if you are well-equipped. I am sorry that you are on that path now. I am glad you have joined us.

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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


Sun Apr 24, 2011 3:56 pm
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Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
Mom got to the point at which she couldn't handle the stimulation of large gatherings, with too many people, too many conversations and too many things happening that directly related to her. If the activity does not demand anything of her, such as taking her to the mall where she can watch people but not have to respond to them or even think of them, she's fine but does tire easily. Mom's in the late middle to advanced stage, a 3.0 on the Allen scale and, in her last assessment, able to handle only one out of 30 ADLs.

Interestingly, when we took her to church and then out for Easter brunch yesterday, she did very well. I think it was because we positioned her new great-grandson directly in front of her, both at church and at brunch. She was so rapt, watching that sweet boy, that I don't think she was even trying to follow the conversation. So maybe having a distraction, stimulus, upon which the LO can concentrate and escape the stress of a situation helps. When she is physically able to transfer in and out of the car, we do still try to provide stimulation such as going to a mall or for a lake walk or something. But more because it is something she enjoys than any attempt to preserve what is left of her cognition. At this point, the faster Lewy progresses, the better.

Kate

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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]


Mon Apr 25, 2011 1:13 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
Even if Derek did not participate in a social conversation the stimulus caused a kind of backlash that would take days from which to recover. He would be almost comatose. I'm not sure if was the sensory bombardment or the strain of trying to 'be there' that did this, I only know that during the past few years he has done much better with the least amount of sensory stimuli. I am so grateful that, for now, he has a private room at the SNF. After he has to go on Medicaid, that will change. :cry:

Yesterday he got very angry because I was having a conversation with the nurse in his room. He told us to 'stop the chatter!'

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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 Apr 25, 2011 2:12 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
Pat,
That's how Jim would get too if I was talking to someone else in the room or on the telephone, it wasn't easy that's for sure !

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Irene Selak


Tue Apr 26, 2011 4:38 pm
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