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 Our bus tour experience 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Our bus tour experience
First, Coy has had LBD for 8 years, is in early stage, and also has foot deformities that make standing for long periods difficult and CHF that reduces his walking stamina. Our experiences may not be relevant for your situation. This may be of more interest to CGs with LOs in early stage.

Coy has mostly good days, but a couple days before the trip he seemed a little down. I was worried that he might be coming down with something (which he wasn’t) and hoped that he would have good days on the trip (which he didn’t). He was less alert than on a similar trip last year, and much more “wobbly” than he has been for some time.

Here is what we did on our 4-day alumni bus tour into South Dakota led by the head of the geography department, and also the challenges for Coy along the way.

Wednesday – first stop a history museum, for about an hour. Museum guide lectured while we stood. This was too hard for Coy so I found him a chair. (I noticed that it was too hard for several other people to stand that long, too.)
Lunch at a German restaurant with ethnic food. To help speed things I cut Coy’s chicken breast up for him. He ate about a fourth of his food (but all of his dessert 8) ).
Toured an art museum and then an agricultural museum. Used wheel chair and Coy enjoyed both. Without the chair it would have been too much standing.
Dinner, I picked pasta and shrimp for Coy because it is easy for him to eat. Food was awesome and he enjoyed it, although he ate less than half. We carried our dessert back to the hotel and enjoyed it later.
Heard a lecture on economy of SD. Coy seemed to follow it, and enjoyed certain details.

Thursday – simple breakfast at the motel. Long bus ride. Coy didn’t seem to pay much attention to the commentary by the geography prof. It might have been hard for him to hear.
Lunch was a buffet of pizza and fried chicken. I helped Coy through the line and got his drink. He enjoyed it and ate almost everything he selected. He didn’t converse much with others at our tables throughout the trip.
Toured the state capital building, with wheelchair. Coy enjoyed it.
Two hour bus ride. Coy sometimes read. We had small snacks throughout each ride, and plenty of water and coffee or tea. Mostly after lunch there was no commentary so we could nap!
Spent about an hour in Wall Drug. Used wheelchair. Coy picked out a t-shirt and generally got a kick out of the place.
Dinner was about a block from the hotel. Used wheelchair. The party room was upstairs, with no elevator, but Coy managed that OK. (Glad we hadn’t walked the block first!) Dinner was awesome, but huge quantities. Again I helped Coy by cutting up his food. He does not seem to mind this in public.
Friday – hot breakfast buffet for our group at hotel.
Toured a buffalo ranch, which we both enjoyed greatly. Not much walking involved. Lots of wind, though, (hey, it is SD!) and Coy went back into the bus after seeing the herds.
Toured an art studio with great photography. Coy was particularly wobbly at that point and by the time he walked from the bus to the building he had to sit down immediately. The rest of us stood and listened to the artist explain his work. I don’t think Coy heard much of that, but I don’t think it would have interested him much anyway. He did look at the pictures.
Toured a cattle ranch. Mostly stayed on bus. Coy didn't seem to listen much to the rancher, but did look at the cattle.
On comfort stop during next leg of bus trip, Coy wanted to stay on bus so I went into the rest stop without him, but then he wasn’t on the bus when I returned! He decided at the last minute to go in, so I went back and made sure he was OK, and the whole bus waited while he finished his business. :oops: Everyone was very kind and patient with Coy.
Lunch was a sandwich, chips, and fruit packed by the hotel and eaten in the bus. That worked fine for Coy.
Dinner fit our usual pattern, me helping by cutting the meat and Coy leaving a lot uneaten (which more of us should have done, actually. :lol: )
The bright lights outside our room bothered my sleep, but nothing bothered Coy! I had to help him a lot getting ready for breakfast on time. He was still sleepy.
Saturday – long tour of Sioux Falls, with no exiting the bus. Coy didn’t pay much attention to our guide but was alert and interested in the sites.
Lunch was at park pavilion, with reasonable sized portions. It was the only meal on the trip that Coy finished completely.
Toured petroglyphs. Terrain was uneven but they provided a golf cart for Coy. He was pretty tired and just viewed a small part of the exhibit and spent the rest of time resting in the cart.
Dinner was fish and Coy didn’t need any help. He ate about half.
We got home about 9:30 pm; he was in bed by 11:00 and slept until 2:30 the next afternoon! I expect that he’ll need extra sleep for several days.

I told him that I knew the trip was kind of fast-paced for him and had been very tiring. I asked if he thought it was worth it, and if he’d ever want to take a similar trip again. His response was, “Oh yes! I need to have things to enjoy in life.”

A tour like this is ideal for me. The extent of my planning was checking off menu choices sent in advance and figuring out how to pack for unpredictable weather. I didn't have to drive, lug luggage, pick out hotels or restaurants, or sites to see. I could concentrate on helping Coy and enjoying the trip and visiting with other people. I hope that the college does another one next spring, and I hope that Coy will still be able to enjoy it!

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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 May 09, 2011 3:41 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 727
Location: LA
Post Re: Our bus tour experience
Good for You!!!!

Dorthea


Mon May 09, 2011 4:32 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Our bus tour experience
Wow, Coy is just so lucky to have you. Good for you!!!!!!!!!!

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


Mon May 09, 2011 4:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Our bus tour experience
Thank you for sharing the trip with us! I think it's great that Coy is still able to enjoy these events. More power to you! :P

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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 May 09, 2011 4:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Our bus tour experience
Glad you had a good trip! Isn't Wall Drugs an "interesting" place? Sioux Falls is very beautiful. Did you get to the Corn Palace? I think it's somewhere in that vicinity. I'm glad you can still travel! 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 May 09, 2011 7:52 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Our bus tour experience
Sounds like a win/win situtation for you both, glad you had the chance to share this time with Coy !

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Irene Selak


Mon May 09, 2011 10:32 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Our bus tour experience
Your trip sounds like fun. Just to be able to get away from the usual day to day routine is good. Life closes in around us if we don't make an effort to get out and about. Trips can go well or they can be awful, but they are not routine. Smiles, Nan


Mon May 09, 2011 10:50 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Our bus tour experience
thanks for sharing this kind of story…this is really helpful for me…gives me hope for down the road

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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


Tue May 10, 2011 1:42 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Our bus tour experience
My parents, both in mid-80's, take these bus trips all the time. It lets them do new things without the stress of driving and making the detailed arrangements for the trip. Hope you get to go on another one.

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


Tue May 10, 2011 7:43 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Our bus tour experience
What, no corn palace stop?

Good for you, Jeanne and good for Coy! It's wonderful that you can do this kind of thing. I go back and forth on whether to take Mom to Aberdeen next month for one of her grandson's wedding. She's getting pretty advanced...

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]


Tue May 10, 2011 1:37 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Our bus tour experience
Kate - how does she do on a short trip out of the facility? Can she transfer herself at this point?
She might really be happy going to the wedding, but if she needs major assistance in getting her in and out of the vehicle, in and out of a wheelchair, etc. you'd obviously need a lot of helpers lined up!
Then again, she may be overwhelmed by the stimulation of noise, lots of people, lots going on..... Have you asked her nurses and other CGs what they think? 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.


Tue May 10, 2011 1:47 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Our bus tour experience
It wasn't on our itinerary, but several of us argued that we could not spend a night in Mitchell and not see the only Corn Palace in the world! Tour guide said if we'd get up and leave 15 minutes early, he'd have the bus driver slow down in front of the palace as we left town. Well of course he relented and stopped and many of us jumped out and took pictures.


Attachments:
Corn Palace Front 5-7-2011 6-56-45 AM 3264x2448.JPG
Corn Palace Front 5-7-2011 6-56-45 AM 3264x2448.JPG [ 148.9 KiB | Viewed 3805 times ]

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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
Tue Jun 14, 2011 1:02 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Our bus tour experience
Thanks, Jeanne! You saved me a trip. :lol:

_________________
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 Jun 14, 2011 10:07 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Our bus tour experience
It is amazing. Don't need to go there again, but glad I saw it once!

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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.


Tue Jun 14, 2011 5:23 pm
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