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 Adventures are good for LBD folks -- in the Early Stage 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Adventures are good for LBD folks -- in the Early Stage
One of the first times we met with Dr. Brad Boeve he said, “Novelty-seeking behavior is therapeutic.” I think that is doctor-speak for “new experiences are good for you.” Hmm … hadn’t I just been reading that dementia patients do best in familiar surroundings, sleeping in their own beds, with minimum change and disruption to their routines? That didn’t seem consistent with novelty-seeking. On every subsequent visit, Boeve has asked Coy if he has taken any trips or done anything interesting.

I took the good doctor seriously and since the lbd diagnosis we have been to Glacier, the Grand Canyon, Phoenix twice, visited San Antonio, taken an Amtrak trip with a sleeper car, taken a cruise to Tahiti, been to the Terry Redlin museum in SD, the SPAM museum in southern MN, the Circus Museum in Baraboo WI, and taken a bus tour to Iowa, including the Amana colonies and the Hoover Museum. That was all pretty novel for us!

I think the key factor is that we’ve done all this while Coy is in the early stage. I know that Leone and Dale had lots of adventures while he was in early stage, and other caregivers have reported that, too. I don’t know how it is with other forms of dementia, but apparently ol’ Lewy likes new experiences, at least in the beginning. Because of physical limitations the adventures are getting a little closer to home. I intend to keep them up at whatever level Coy can enjoy for as long as he can enjoy them.

It seemed weird when he said it, but I think Dr. Boeve is right. Novelty-seeking behavior is therapeutic – at least in the early stage.

(I’ve enjoyed these experiences immensely. But don’t let anyone tell you that trips with Lewy are vacations for the caregiver!)

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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


Wed Feb 23, 2011 12:45 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Adventures are good for LBD folks -- in the Early Stage
I'm so glad you and Coy can still enjoy 'away from home' adventures, Jeanne. Our trips of the last two years now seem so long ago. Dale's hospital bed is still a 'magic carpet' for him but that's all in his dreams.

Many people urged me to seriously re-consider the idea of taking Dale on airplane trips in the past two years - but I'm glad we did it. We never had a problem... but then, Dale is a very mild mannered man. Even though he is totally delusional at this point, Lewy has yet to make him into anyone else.

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


Wed Feb 23, 2011 7:46 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Adventures are good for LBD folks -- in the Early Stage
Coy didn't golf yesterday because the course was hosting a tournament and his league was not scheduled. Knowing this ahead I made alternate plans. We took in the King Tut exhibit at the science museum. We were there about 4 hours, including seeing an Omni therater show on mummies and having a snack. Coy was in the wheelchair the whole time and did not seem to get tired. He enjoyed the day. We bought t-shirts and a book and DVD that he can share at his day program.

I was a little surprised that he couldn't work the audio device for the self-guided tour. He can mostly handle the complicated tv remote and this was much simpler. I guess there just wasn't enough learning curve time for this. I started each narrative for him before starting my own, and it worked fine.

This half-day adventure will continue to have benefit as he wears his t-shirt and gets asked questions about it, and as he looks at the book and watches the video.

We had seen a much more elaborate and extensive King Tut exhibit in Chicago, long before Lewy joined us, and I think yesterday's experience called up some of those memories, too.

I know full well that people in advanced stages could not enjoy or benefit from this kind of outing. We may reach that stage -- who knows when? My philosophy is Do it while you can.

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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 Aug 13, 2011 2:39 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Adventures are good for LBD folks -- in the Early Stage
How nice Jeanne!! What a sweet thing to do together!! Thanks for sharing this!!

Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat Aug 13, 2011 3:53 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Adventures are good for LBD folks -- in the Early Stage
I know I plan on seeing as much as I can...

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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


Sun Aug 14, 2011 6:56 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Adventures are good for LBD folks -- in the Early Stage
Late stages too, except much simpler adventures. My sister took Mom for a walk around Lake Harriet (for those outside of Minnesota, that's one of our prettier in-city lakes), but forgot sunscreen. Mom loved it anyway. And we took her out for a manicure yesterday. They do have a manicurist at the SNF, but the experience is no where near as nice as at Juut.

Mom's very tired today, but it was worth the tiredness. I'd rather have her get out and enjoy what she can than to have her alert, but sitting in the dementia unit all day everyday. Mom may not remember anything of these days, but we do and will. Besides, it's kind of a fun thing for Mom to show off her pretty nails and even her sunburn (for which my sister is terribly sorry).

It may be necessary to tone down the outings, but as long as the transfers can be made from chair to car and back, I think it is good to let Mom live life as much as she can.

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]


Sun Aug 14, 2011 9:54 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Adventures are good for LBD folks -- in the Early Stage
I'd say Frank is in late stage, but very healthy, so my guess is that we'll be here for a long time. He doesn't seem to enjoy any part of life, seldom talks and when he does, it doesn't make any sense. I tried to keep him engaged by taking him to breakfast a couple times a week with his friends but I "think" it was torture for him. Except for his massage and Dr app. I only take him for an occasional ride, but even that is a huge challenge to get him into the car. Do what you can to help your LO live, but I recognized I wasn't doing Frank any favors by getting him out.
Take care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Aug 15, 2011 5:34 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Adventures are good for LBD folks -- in the Early Stage
And that really is the big challenge, isn't it Gerry? We all want to do the best for our LOs, but figuring out what that is as the disease progresses is somewhere between extremely hard and impossible. I think it is pretty clear that what I'm doing with Coy is good for him now. But at some point it might cease being good and in fact become torture. I only hope I'll recognize the signs.

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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


Mon Aug 15, 2011 10:04 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Adventures are good for LBD folks -- in the Early Stage
Coy wore his King Tut shirt today. I asked him if he like it. He said, "Yup. Now all I need is a camel." :lol:

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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


Mon Aug 15, 2011 10:45 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Adventures are good for LBD folks -- in the Early Stage
I think the signs will be pretty clear to recognize. First, the transfer thing gets to be a HUGE issue. Sitting up in the car becomes a big issue. And finally, after they are out in the car for more than 5 min. they want to go back "to that place where I live now". When my dad's transfer issues became too great and I couldn't get him out of the car, I'd at least take him out for drives, run his errands and have him sit in the car, because I too thought it was good for him to get out of his room. When he didn't want to go in the car I'd take him for rides in his wheelchair and I'd push him for as long as he wanted. What he wanted went from about 10 min. down to "I don't want to go out anywhere." :cry: I hated seeing him all cooped up, but their world really does become smaller and smaller mainly by choice.
So, get out there while you can because it won't be like that forever. Your LO will let you know when the excursions become too much, in my experience. Enjoy it while you and they can too. 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.


Mon Aug 15, 2011 12:10 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Adventures are good for LBD folks -- in the Early Stage
Jeanne,
I love Coy's sense of humor!!! Thanks for sharing that.....Mine has been coming back a little with the Namenda....

and I agree with Lynn about adventuring out...for me - it fluctuates! some days I need to be home all day where I feel safe......other days I am ready to venture out...I hope I can keep venturing out for a long time like Coy.....I have been having lots of fluctuations in abilities and moods...I think this might be due to the titration upwards with the Namenda, but I am hopeful some of that will pass once I am at target dose (wednesday) and things in my brain and body can level out....

I think I need to go somewhere and get a T-shirt!! My husband is going to make his first trip away from me since my dx....we are both scared but maybe I'll ask him to bring me a t-shirt! :) Also it's important for me to get some confidence back to know I can be okay for a week alone......it will be hard for us both....speaking of adventures...this is sort of a different type! a staying alone at home adventure! does it count? :P

Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Aug 15, 2011 2:40 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Adventures are good for LBD folks -- in the Early Stage
Lynn, you are right. Even when I take Derek outside in his w/c to enjoy the sunshine and fresh air he wants to go back to his room. This is SO unlike the 'real' Derek, who always loved being outside. His room is his 'comfort zone' now, if he has a comfort zone at all. :cry:

_________________
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 Aug 15, 2011 2:41 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Adventures are good for LBD folks -- in the Early Stage
Pat, my mother's room has become her comfort zone, too. And she is less and less interested in going anywhere. I hired a CG to take her out for drives in our beautiful countryside, which she used to love, so that she would have extra outings besides what I can manage. She really likes the CG but half the time when the CG calls to remind her of their next planned outing, she cancels or postpones it.

In general, overstimulation is becoming more of an issue--too much noise, too many people, too much commotion of any kind. I think going out anywhere is part of that. When I take her out, she doesn't want to be gone more than an hour or so, whereas it used to be the longer, the better. So we just adjust to what she can handle.

Julianne


Mon Aug 15, 2011 3:48 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Adventures are good for LBD folks -- in the Early Stage
Yes, we need to adjust to their needs rather than force things upon them. This morning, for instance, when I arrived at 9:30 Derek was still in bed asleep. This is unusual and the aide told me he refused to get up so she let him sleep. I could tell she thought I might be upset about it but I told her, no, don't wake him if he wants to sleep. I stuck around and helped get him up later in time for his 'brunch'. Nothing gets his dander up like someone forcing him to do something he doesn't want to do and well I know that!

_________________
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 Aug 15, 2011 3:55 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Adventures are good for LBD folks -- in the Early Stage
Pat, i just recently went through that with my mother. The aides were trying to get her up around 9 a.m.--late for them, early for her. She would become either angry or hysterical. Finally, I asked the DON if they could please just let her sleep until she wakes on her own. They wake her up around 7 a.m. for meds already and she just goes back to sleep, so the only disruption is to the aides' schedule for providing breakfast and ADLs. I am sorry for that disruption but my mother's needs really should come before their schedule. So two or three weeks ago, that change was implemented, and presto! No more morning drama.

My sister pointed out that as our mother's world shrinks, everything in it becomes larger, and control over anything becomes really huge to her. So being ordered out of bed (in her mind) was really infuriating. I really have to stop and try to view things from her perspective when I can.

Julianne


Mon Aug 15, 2011 4:02 pm
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